## ANNUAL REPORT AND ACCOUNTS
For the year ended 31 July 2025
## **Trustees' Annual Report for the period**
||Period start date|Period start date|||Period end date|Period end date||
|---|---|---|---|---|---|---|---|
|**From**|1|8|2024|**To**|31|7|2025|
## Section A Reference and administration details
**Charity name** alport uk
**Other names charity is known by** n/a **Registered charity number (if any)** 1154774
PO Box 329 **Charity's principal address**
Cirencester
**Postcode** GL7 9JA
## **Names of the charity trustees who manage the charity**
|1
2
3
4
5
6
7
8
9
|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**|
|---|---|---|---|---|
||Susie Gear|Chief Executive|01 August 2024 to 31
December 2024||
||Frances Flinter|Chair of trustees|Wholeyear||
||Rachel Lennon||Wholeyear||
||Neil Turner||Wholeyear||
||DannyGale||Wholeyear||
||Tim McLean||01 August 2024 to 12
January2025||
||Amanda McLean||Wholeyear||
||Alex Tidey||14 July 2025 to 31 July
2025|Proposed by chair, appointed
bytrustees’ vote|
||Alice Turner||Wholeyear||
||||||
||||||
**Names of the trustees for the charity, if any, (for example, any custodian trustees)**
||**Name**|**Dates acted if not for whole year**|
|---|---|---|
||n/a||
||||
||||
**Annual report 01 August 2024 to 31 July 2025**
## **Names and addresses of advisers (Optional information)**
|**Type of adviser**|**Name**
**Address**|**Name**
**Address**|
|---|---|---|
|**Medical –**
**paediatric**
**nephrologist**|Professor Rachel
Lennon|Royal Manchester Children's Hospital, Oxford
Road, Manchester M13 9WL|
|**Medical – adult**
**nephrologist**|Professor Neil Turner|University of Edinburgh Renal and Autoimmunity
Group, MRC Centre for Inflammation, Queen's Medical
Research Institute, Little France, Edinburgh, EH16 4TJ|
|**Medical – adult**
**nephrologist**|Professor Daniel Gale|Department of Renal Medicine, University College London|
|**Geneticist**|Emeritus Professor
Frances Flinter|Emeritus Professor of Clinical Genetics, Guy's & St
Thomas' NHS Foundation Trust
Genetics Department, 7th floor Borough Wing, Guy's
Hospital, Great Maze Pond, London SE1 9RT|
|**Physiologist –**
**hearing**|Professor Dan Jagger|University College London, UCL Ear Institute, 332 Gray's
Inn Rd,London,WC1X8EE, UnitedKingdom|
|**Eye specialist**|Dr Omar Mahroo|St Thomas’ Hospital Campus, 3rd Floor South Wing Block
D, Westminster Bridge Road, London SE1 7EH|
|**PR,**
**Communication**
**and Marketing**|Jane Keightley|JK Branding and Communications Limited|
|**Accountant**|David Cuthbertson|Shilton Accounting Services Ltd|
|Name of chief
executive or
names of senior
staff members
(Optional
information)|||
|Susie Gear, Chief|Executive||
||||
## **Section B Structure, governance and management**
## **Description of the charity’s trusts**
Constitution Type of governing document (eg. trust deed, constitution) Charitable Incorporated Organisation How the charity is constituted (eg. trust, association, company) Appointed for a term of 3 years by a resolution passed at a properly Trustee selection methods convened meeting of the Charity Trustees (eg. appointed by, elected by)
**Annual report 01 August 2024 to 31 July 2025**
## **Additional governance issues (Optional information)**
You **may choose** to include additional information, where relevant, about:
- policies and procedures adopted for the induction and training of trustees;
- the charity’s organisational structure and any wider network with which the charity works;
- relationship with any related parties;
- trustees’ consideration of major risks and the system and procedures to manage them.
Policies and procedures for the induction and training of trustees
- Provided with a guide for how the charity operates – this now includes a set of policies on topics such as expenses, relationship with pharmaceutical companies, sponsorship etc.
- Disclosure and Barring checks
- Given a briefing on the charity and engaged in activities to enable them to participate fully in the decisions of the charity.
Organisational structure of the charity and wider network
- We are a small charity and so have a very flat organisational structure.
- • Day-to-day activities are run by one of the trustees – Susie Gear with one full-time employee and one part-time employee and a number of volunteers. All day-to-day decisions are jointly taken with at least one of the other Trustees eg Alice Turner, Emeritus Professor Frances Flinter or Professor Rachel Lennon. If we need to check any of the decisions, we involve the other trustees - who are less involved in the day-to-day activities and so provide excellent challenge and objectivity.
- • Our closed Facebook page, Alport Warriors, is moderated day-to-day by one of our volunteers – Wilma Calderwood – with back up from the Social Media Manager and Susie Gear and with any specific medical questions answered by our medical advisory team – see list above.
- • Our public facing social media eg Facebook and Instagram pages are run by the Social Media Manager, Susie Gear and some of the younger Alport Warriors.
- • Alport UK’s Scientific Advisory Committee provide expert medical input and advice as required: Professor Colin Baigent (Strategic direction of research and Clinical trials), Emeritus Professor Frances Flinter (Clinical and particularly Genetics and diagnoses), Professor Danny Gale (Rare Renal Database RaDaR and Clinical trials), Professor Rachel Lennon (Paediatric Nephrology, Podocyte research and clinical guidelines) and Professor Neil Turner (Adult Nephrology and RaDaR).
- • Alport UK’s international Workshop Organising Committee is made up of a wide range of 40 experts – researchers, clinicians, academics and Alport patients – with representation from Australia, Belgium, Brazil, Canada, China, Croatia, Cyprus, France, Germany, Hong Kong, Israel, Italy, Japan, Lithuania, Poland, Russia, Singapore, Spain, Thailand, UK, USA.
- Trustees’ consideration of the major risks & procedures to manage them: • **Support** – as we support patients and family members living with Alport Syndrome, there can be specific questions or situations that require medical advice or input. For the majority of questions, it is Alport UK’s policy to encourage patients and their families to partner with their own clinicians to explore their questions and concerns together. This is because the questions often require a detailed clinical history, which a patient’s own clinician is best-placed to support with. Where this is not possible or for more general questions, we have a scientific advisory committee which is available, with 24 hour turnaround, to provide expert medical input and advice to patients and their families. All committee members are practising/retired clinicians in the NHS and are recognised internationally for their experience and expertise. We also have a wider network of international experts from whom we can get additional opinions, as required. As we support a number of young adults and vulnerable adults, we have a Safeguarding Officer, who we consult if there are any safeguarding
**Annual report 01 August 2024 to 31 July 2025**
- concerns. Mental health is an ongoing challenge for patients living with a life-long condition where the health declines, so we encourage patients to seek professional help from the NHS and help them access the necessary services often through renal units or Kidney Care UK.
- • **Information** – all published information and recommendations published on our website, alportuk.org, is reviewed by members of our scientific advisory committee.
- • **Research** – all projects we embark on are reviewed by members of our scientific advisory committee and we get input from a wider network of international experts and patients, as required. This includes assessing clinical trials and although, as a charity, we never recommend participation in a trial, we direct patients to discuss clinical trials with their own clinicians and provide as much information as possible to support patients’ decisions on participating in a trial. If we have concerns with a trial, we publish views in international publications, as necessary.
- • **Collaboration** – is a core way of working for our charity. We collaborate with other national patient organisations and an international scientific community interested in research into Alport Syndrome. We run monthly conference calls and a series of international workshops for all involved to keep in touch with progress. Funds for these international research activities are kept in a separate bank account so that the international expenditure is transparent – and separate to the UK funds - to maintain the open collaborative working environment. To ensure all appropriate risks are managed related to this international collaboration, we have an international Workshop Organising Committee to ensure there is a balance of work and information across different countries or continents. Our aim is to collaborate with an increasingly diverse community to remove bias.
- • **Fundraising, finances and projects** – As a small charity, we fundraise for specific projects and these funds are kept in separate bank accounts ‘ring-fenced’ for each project. The majority of our fundraising is through applications to larger charities that support small charities, such as ours, with funds allocated for specific activities, such as the information days or international workshops undertaken by alport uk. Increasingly, we also seek funding for work from biotech and pharmaceutical companies. We aim to raise collaborative funding for any project, so we are not reliant on one company for project funding which also means Alport UK is not associated with one company for one particular project.
## **Section C Objectives and activities**
The objects of the CIO are the relief of sickness and the promotion of **Summary of the objects of the** health of those people suffering from Alport Syndrome, in particular, but **charity set out in its** not exclusively by: **governing document**
- The establishment and facilitation of **a support network** for Alport Syndrome patients, carriers, their families and carers;
- - The **provision of information** on Alport Syndrome; - The **support of research** into Alport Syndrome both in the UK and internationally;
- - The **support of a research registry in the UK** and an international alliance of national registries
**Annual report 01 August 2024 to 31 July 2025**
|**Summary of the main**
**activities undertaken for the**
**public benefit in relation to**
**these objects (include within**
**this section the statutory**
**declaration that trustees have**
**had regard to the guidance**
**issued by the Charity**
**Commission on public**
**benefit)**|**Public benefit – statutory declaration by Trustees**
The Trustees have paid due regard to the Charity Commission’s
guidance on public benefit in deciding what activities the charity should
undertake. alport uk recognises and welcomes the need to carry out its
charitable activities to the benefit of those affected by Alport Syndrome,
and retains this aim at the centre of its strategic planning.
**alport uk is a patient-led organisation**dedicated to facilitating a
support and information network for all those affected by Alport
Syndrome.
**Alport Syndrome**is an inherited condition that can cause kidney failure,
deafness and eye abnormalities. Those that inherit it will probably require
a kidney transplant when they are young adults. It can impact a large
number of people in a family. It is the second most common form of
inherited kidney disease. Meet Sam to understand the impact it has on a
family:https://youtu.be/4vRuYBn6St4.
**Our Vision**is to ensure that all individuals and families with Alport
Syndrome feel empowered to enjoy the best quality of life.
**Our Mission**is to work in partnership with individuals, families and the
scientific community to:
• Facilitate a**support**network for patients and families
• Be a conduit for high quality, accessible**information**
•**Raise the profile**of Alport Syndrome in the scientific
community
• Contribute to the international**research**agenda
•**Collaborate**on the development of a UK patient registry
and alliance of international patient registries.
**alport UK fund four key areas of activity**
1.**Support**– Provide support for UK patients and families through a
support network, website and information days.
2.**Information**– Work with clinicians, individuals and families to
educate them on more effective diagnosis and treatment, for example
national and international guidelines for diagnosis, treatment and the
best care for children, teenagers and adults.
3.**Research**– Work with other national patient organisations (eg USA,
across Europe and Asia) to:
a. Facilitate and drive the design, development and maintenance
of an international research strategy and plan for Alport
Syndrome using a programme of international workshops –
online and in-person.
b. Grow a global network – of patients, clinicians, laboratory
scientist and pharma companies – the Alport Syndrome
Alliance. The aim of the Alliance’s global network is to
advance treatments and knowledge.
4.**Collaboration**– Bring together the scientific community to work
across the different clinical disciplines that specialise in kidneys, ears,
eyes, mental health, other rare disease areas with similar issues etc.
and work with the nationalpatient organisations or other rare renal|
|---|---|
**Annual report 01 August 2024 to 31 July 2025**
disease groups to share best practice with developed and developing countries.
The activities of alport uk are grounded in the local communities across the UK as we aim to connect up regional groups of individuals and families that are affected by Alport Syndrome. As a possible few thousand individuals impacted in the UK, it is a small population of those living with Alport Syndrome if looked at on their own. This requires alport uk to work internationally with other national patient organisations and clinicians to co-ordinate activities and research across a far bigger group of patients, particularly those with 100,000+ patients in countries such as China and USA.
**Annual report 01 August 2024 to 31 July 2025**
## **Additional details of objectives and activities (Optional information)**
## **Contribution by volunteers**
**alport uk had two part-time employees for most of this period, with a third joining in recent months. The Chief Executive, leading the performance and achievements, is a volunteer.** Many other volunteers come to us initially asking for support and then offer their many skills to help others as they see how they have benefited.
**Our community often reflect and remark on the journey we’ve been on and the remarkable progress alport uk makes and their ability to support patients and deliver professional international events that appeal to all stakeholders.**
## **Remembering Tim McLean**
We are deeply thankful for the vast contributions made by Tim McLean to the work of Alport UK. Tim was a trustee, advocate and volunteer for Alport UK until he passed away following a short illness at the end of March 2025. Tim participated in Alport UK information days in Newcastle and Liverpool, and international workshops in Siena and Cyprus, asking questions about research, and always ready to offer his thoughtful guidance and support to other families. Tim used his expertise from working on another rare disease (Huntingdon’s) to advise scientists embarking on rare kidney disease research. He welcomed and reassured families newly diagnosed with Alport with a kindness which has made a lasting impact on many in the community.
**We are incredibly grateful to the many volunteers for this remarkable progress, especially for the many contributions from the following key and very motivated people:**
- **Jeanette Bailey** for being the local lead patient representative in the core planning team for the Nottingham information day
- **Katie Brown** for transforming Alport UK’s social media strategy and engaging and supporting others living with Alport Syndrome. Katie also helped to deliver the Nottingham information day, visited and interviewed fundraisers and researchers, represented -
- post transplant patients at a European rare kidney disease
**Annual report 01 August 2024 to 31 July 2025**
meeting and welcomed people into a new WhatsApp group for parents of children who have Alport Syndrome.
- **Tiegan Brown** for raising awareness of how Alport Syndrome affects women in her successful EPQ research project.
- **Wilma Calderwood** for her day-to-day moderation on our closed Facebook page, Alport Warriors.
- **Sam Clarke** whose 4,776-mile cycle ride in 2019 allows us to use the funds raised to start the ‘Don’t Wait Fund’ to support patients with Alport Syndrome take up a new activity or hobby.
- **Amanda McLean** for representing people living with Alport at the Alport Research Hub Symposium and in scientific strategic advisory boards.
- **Alice Turner** for her continuing enthusiasm and fundraising work, ideas and help with running Alport UK.
- **Heidi Zealey,** a valued member of the Alport UK core team, for continuing to represent Alport UK with European patient groups such as FEDERG and ERKNet EPAGs, including working on European clinical guidelines for Alport Syndrome.
**Grateful thanks to all those who raised money for us this year** – every penny makes a difference. Particular thanks go to:
- **The McLean family.** With great thoughtfulness in a very difficult time, the McLean family raised funds for Alport UK through selling Tim’s bike and by asking for donations at his funeral. Hazel McLean will be taking on the Great North Run for Alport UK in September 2025.
- **The Wride family,** who raised an incredible £5,512 for Alport UK. Every member of the family planned their own fundraising challenge, and they were supported by their family, friends and local community as they raised awareness of Alport Syndrome and raised these phenomenal funds. Reg completed a 64 mile double marathon ultrarun - the Race to The Tower; Bev and friends took on a 31 Mile walk along the Worcestershire Way; Woody played basketball for hours; Martha and Maggie stayed silent for 24 hours.
**Annual report 01 August 2024 to 31 July 2025**
- **Karl Hassan** - Shortly after Karl Hassan’s son’s diagnosis with Alport Syndrome, Karl ran a marathon, raising over £3,000 for Alport UK!
- **Dr Lorna Milne** , a dedicated scientist who is researching what happens in pregnancy and kidney health for women with Alport Syndrome, ran the Milton Keynes marathon, raising vital funds for Alport UK.
- **Jane Jewers** , in her year as Ladies’ Captain of Stowmarket Golf Club, raised £1424 for Alport UK through raffles and other fundraising events.
- **Evie Turner** trained for a mountain climbing challenge in her school holidays.
**Annual report 01 August 2024 to 31 July 2025**
- **Alice Turner** raised £250 taking on a ‘Dry January’ challenge.
- • **Sandra Jones,** who has supported Alport UK with fundraising for years, completed another Kiltwalk for the charity.
- **Lauren Brand** and family organised their annual plant sale, raising vital funds for Alport UK.
- **Jamie Walker** organised a reeling party, raising funds through tickets sales and by running reeling practices where young adults are taught to Scottish reel.
- **All those who donated funds raised from funerals of loved ones.**
**And those who generously provided alport uk with a grant:**
- **Amelia Chadwick Trust**
- **BBC Children in Need**
- **CHK Foundation**
- **Dyer’s Company and other livery companies**
- **Kidney Care UK**
- **Kidney Research UK**
- **Liverpool Charity and Volunteer Services**
- **Story of Christmas Trust**
- **Stoneygate Trust**
- **Commercial companies – Bayer and Calliditas,** who are sponsors of the upcoming 2025 International Workshop on Alport Syndrome in Beijing.
**And a number of people who wish to remain anonymous** but to whom we are very grateful for their support and encouragement.
**We wish to thank our Scientific Advisory Committee** for continuing to spend so much time this year advising and supporting support the community as the pandemic continued its hold whilst they were all also very busy on clinical wards helping with renal issues. They answered all queries within 24 hours, ensuring the community remained as calm as possible at such a worrying time for renal patients. We are so very grateful to the scientific community for their help to answer all questions and emails as and when they arose from patients or other scientists **.** Very many thanks to our UK Scientific Advisory Group: **Emeritus Professor Frances Flinter Professor Danny Gale Dr Matt Hall Professor Dan Jagger Professor Rachel Lennon Dr Omar Mahroo Professor Roser Torra Professor Neil Turner Professor Colin Baigent.**
We wish to thank those involved in growing **Alport Avengers** , an invaluable WhatsApp group specifically aimed at 18-35-year-olds, joining and sharing their experiences to help others. This included **Katie Brown** , **Sam Clarke, Jamie Walker, Patrick Walker** and **Aura Zealey-Smith** .
We are also very grateful to our colleagues who run the other national patient organisations and collaborate with alport uk, such as **André Weinstock** (Alport Syndrome Foundation, USA), **Maria José Cacharron** (Spain), **Jessie Zhang and Mr Cai** (China), **Christof Finkler** (Germany), **Dave Blatt** (Australia).
**Annual report 01 August 2024 to 31 July 2025**
Huge thanks to the inspiration of many volunteers around the world – each Alport experts in both their scientific area and geography - that make up the **Workshop Organising Committee for The 2025 International Workshop on Alport Syndrome which will take place in Beijing, China: Dr Marina Aksenova** , Veltischev Research and Clinical Institute for Pediatrics of the Pirogov Russian National Research Medical University, Moscow, Russia **Professor Colin Baigent** , MRC Scientist, Hon Consultant in Public Health, Oxford, UK **Assistant Professor Moumita Barua** , Toronto General Hospital, Toronto, Canada **Dr Agnė Kerpauskienė,** Division of diagnosis and treatment of Rare Kidney and Metabolic Diseases, Nephrology Center, Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania **Professor Constantinos Deltas** , University of Cyprus, Molecular Medicine Research Center, Nicosia, Cyprus **Professor Jie Ding** , Department of Pediatrics, Peking University First Hospital, Beijing, China **Professor Frances Flinter** , Emeritus Professor of Clinical Genetics, Guy’s and St Thomas’ NHS Foundation Trust, London, UK **Professor Daniel Gale** , Department of Renal Medicine, University College London, UK **Professor Danica Galešić Ljubanović** , Department of Pathology University of Zagreb School of Medicine, Head of Department of Nephropathology and Electron Microscopy, Dubrava University Hospital, Zagreb, Croatia **Dr Valentine Gillion** , Nephrology Department, Université Catholique de Louvain, Bruxelles, Belgium **Professor Oliver Gross** , Department of Nephrology and Rheumatology, Georg-August-Universität Göttingen, Germany **Professor Julia Höfele** , Institute of Human Genetics, Munich, Germany **Professor Hirofumi Kai,** Graduate School of Pharmaceutical Sciences, Kumamoto University, Japan **Professor Clifford Kashtan** , Department of Pediatrics, University of Minnesota, USA **Professor Bertrand Knebelmann,** Necker Hospital, Paris, France **Associate Professor Ron Korstanje** , The Jackson Laboratory, Bar Harbor, USA **Professor Rachel Lennon** , Senior Research Fellow and Consultant Paediatric Nephrologist, Manchester, UK **Assistant Professor Becky Mingyao Ma,** University of Hong Kong, Hong Kong **Dr Laura Massella** , Division of Nephrology, Dpt. of Pediatric Subspecialties, Bambino Gesù Children's Hospital - IRCCS, Rome, Italy **Professor Julian Midgley** , Department of Paediatrics, Alberta Children’s Hospital, Canada **Professor Jeffrey Miner** , Washington University in St. Louis, USA
**Annual report 01 August 2024 to 31 July 2025**
**Associate Professor Ng Kar Hui** , Associate Professor, Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore **Dr Thomas Oates,** Consultant Physician, Departments of Nephrology and General Medicine, Royal London Hospital, UK **Professor Luiz F. Onuchic, MD, PhD,** Professor of Medicine, University of São Paulo School of Medicine, São Paulo, Brazil **Professor Laura Perin,** Saban Research Institute, University of Southern California, USA **Mary-Beth Roberts,** MS, CGC, Genetic Counselor, Cleveland Clinic, Ohio, USA **Professor Judith Savige** , University of Melbourne, Australia **Professor Alessandra Renieri** , Professor of Medical Genetics, Director of Medical Genetics Unit, Azienda Ospedaliera Universitaria Senese viale Bracci 2, Siena, Italy **Professor Michelle Rheault** , Department of Pediatrics, University of Minnesota, USA **Professor Roser Torra** , Fundació Puigvert, Barcelona, Spain **Professor Neil Turner** , Professor of Nephrology, University of Edinburgh and Consultant Nephrologist, Royal Infirmary of Edinburgh, UK **Dr Andreia Watanabe** - Division of Pediatric Nephrology, University of Sao Paulo School of Medicine, São Paulo, Brazil **Dr Janewit Wongboonsin** , Genetic Nephrologist, Siriraj Hospital, Mahidol University, Thailand. Renal division, Brigham and Women’s Hospital, Boston, MA, USA **Patient representatives: Dave Blatt** , Alport Foundation of Australia **Maria José Cacharron** , Spain **Christof Finkler** , Alport Selbsthilfe, Germany **Susie Gear, Amanda McLean, Hannah Russell, Heidi Zealey** , alport uk **Julia Schifter** , Alport Foundation Israel **Andre Weinstock** , USA **Jessie Zhang and Mr Cai** , Chinese Alport Syndrome Parent Association Our special thanks to **all members of the Lennon Lab of Manchester University** who are based at the Wellcome Centre for Cell Matrix and led by the inspirational **Professor Rachel Lennon, also responsible for running the Stoneygate and Kidney Research UK Alport Research Hub** . The team all volunteered and worked very closely with alport uk on a number of different events and projects over the year and are doing some amazing basic science research and collaborations with the Alport community around the world. The Lennon lab research work is internationally recognised as leading edge and helping us better understand what happens in the kidneys with Alport Syndrome. They also are always on hand to support alport uk with explaining scientific terms, helping design workshop agendas and generally engaging with the patient community. It is so unusual for patients to be so engaged in research and we have the Lennon lab and Rachel Lennon to thank for this exciting collaboration that is leading to new ways of working.
**Annual report 01 August 2024 to 31 July 2025**
When we organise **Alport information days** , such as the one in Nottingham (July 2025), we work with local kidney doctors and their teams to volunteer, help us find suitable venues and engage the local patient community. To update people on the latest Alport research, we also rely on Alport experts including geneticists, hearing experts and the Alport Research Hub team to give up a Saturday and to travel across the country to come and present their latest research. For the Information day in Nottingham (July 2025) we are very grateful to the following, who volunteered to come to give presentations and answer questions:
- **Matt Hall, Rebecca Preston, Martin Christian, Dan Jagger, Emma Watson, Rosey Billaney, Frances Flinter, Neil Turner, Lorna Milne, Emma Coyne, Farkhanda Jabeen**
- **Paul Heaps –** who kindly took photos of the Nottingham patient day, to share what we do, celebrate our special team, and photograph all who participated.
- **Sam Clarke** – for his excellent videos that are making our work come alive and enabling alport uk to share the important work we do. This year Sam’s filming work included:
**Annual report 01 August 2024 to 31 July 2025**
- Short documentaries of people living with Alport Syndrome across Asia.
- Shining a Light on Alport Syndrome: a one-day workshop for Asia, 20 August 2024.
- A video of highlights from the information day in Nottingham, 5 July 2025.
- **Hannah Russell,** Engagement Director, initially became a volunteer for alport uk soon after her daughter was diagnosed with Alport Syndrome. Hannah’s role, initially as Fundraising and Engagement Manager, was formalised and became a paid part-time role in 2023. With her understanding of the journey that newly-diagnosed families go on, means Hannah sensitively supports those who can find the initial diagnosis challenging. Hannah enjoyed working with the Alport UK team, volunteers, clinicians and researchers to deliver the patient day in Nottingham.
- **Jayne Perrin,** Operations Director, joined alport uk in June 2023. With Jayne’s background in corporate governance, she has mastered processes to run events and manage alport uk operations. The 2024 International workshop on Alport Syndrome in Singapore ran incredibly professionally thanks to Jayne’s tireless efforts. Jayne thrives off the everyday challenges alport uk sets her, has set up new processes to keep the charity running smoothly, and is a greatly valued part of the team. Jayne keeps us smiling and reminds us we achieve a lot as a few part-time women running the charity with so much help from the incredible networks of amazing volunteers.
- **Susan Morris** joined the team as Stakeholder Engagement Manager in May and dived in head first travelling to Nottingham for the information day and Manchester for the Hub Symposium in her first few weeks to meet people living with Alport Syndrome as well as clinicians researchers to understand the breadth of the work of Alport UK. Susan helped to deliver the Nottingham Information day and has already developed a robust fundraising strategy for the year ahead.
## **Thank you to all who contribute!**
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
**Summary of the main achievements of the charity during the year**
The achievements of alport uk this year build from last year and are summarised under the headings of our key objectives and areas of activity below. **Overall, our main outcome is to create a more positive and brighter future for individuals and families living with Alport Syndrome.** Being a rare and therefore small community, we aim to deliver sustainable strategic change for Alport Syndrome, using virtual networks and limited resources to effectively support patients and develop treatments for Alport Syndrome. Positivity and engagement are the main ingredients for all the support we offer – we aim to inspire and encourage people living with Alport Syndrome to be optimistic and explore their own individual route to a brighter future.
## **The philosophy that underpins our performance**
The Six Pillars of Wellbeing – long established as a framework to think about mental health and wellbeing - is a useful structure to encourage positive outcomes for individuals and families living with Alport Syndrome. The Six Pillars that inspire our activities:
- **Stress management** – keeping the community calm and informed with the latest information, so they can become more independent, strong and resilient over time.
- **Nutrition** – inspiring the community to eat healthily to protect their kidneys for as long as possible and when on restricted diet, explore new foods they can eat.
- **Community** – connect to reduce the feeling of isolation caused by having a rare disease that few others either know or understand.
- **Sleep** – ensure the community members can have a routine with good sleep to enable them to deal with the rollercoaster journey that some individuals and families face as part of living with a rare disease and coping with critical events along the way, such as hearing declining, kidney failure and eye issues.
- **Exercise** – we know cardiovascular exercise is good for the kidneys. It is also vital to rebalance the chemical impact brought on by the feeling of anxiety that overwhelms some people living with the fact that their or their children’s kidneys may fail and hearing might decline at some unknown time in the future.
- **Meaningful activity** – encourage individuals, families, and researchers to connect around a shared objective of helping our community in some way, whether it be volunteering for our community, advocating, fundraising, collaborating on research or useful information or sharing stories to help others living with Alport Syndrome.
## **As a small but mighty charity we are very clear what we can do**
Supporting a rare disease is a challenge as there are few people who have Alport, or who want to research it or to fund it. So as a charity we aim to think wisely about how we use our strengths, capabilities, and resources and how to collaborate to complement these. Our volunteers have strong capabilities in delivering commercial innovation and collaboration across virtual networks of international stakeholders around the world. Some examples of the principles that guide what we do in our five key areas of work:
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
1. **Support network:** with a small, isolated patient community with such differing needs, we like to deliver **personal support in a timely way that delivers practical advice** and solves practical issues. alport uk’s role is to empathise, understand the needs/issues, advocate for patients (and researchers) and support delivery of solutions through a virtual organisation with minimal overheads. The power of the internet and social media provide us with very economical tools such as our closed Facebook community page, **Alport Warriors** and our public **Alport UK Facebook page.** With our limited resources, this often means facilitating patient/researcher access to resources. For example, alport uk facilitates patients getting the right diagnosis via genetic testing, understanding treatment options or facilitating the grant application process for holiday breaks via Kidney Care UK’s grant system. alport uk also writes letters of support for researchers to facilitate grant applications for Alport research.
Alport Warriors – private Facebook page
Alport UK – public Facebook page
2. **Provision of information:** with a diverse community and a very complex condition to explain, we try out different ways to provide information in a **variety of formats that suit different stakeholders** . With many of the community facing critical medical decisions as young adults, increasingly we use a combination of **in-person**
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
**Information Days** with **short videos, social media and engaging activities to enable the patient community to engage in formats and content they find valuable** . For example, we encourage young adults to become our ‘media team’ at events, to engage in content, choose what is important and create videos and social media content themselves. Sam Clarke made additional videos about Living with Alport Syndrome to illustrate the positive attitude patients have despite facing health challenges – see one of the videos here that was filmed about a patient’s experience of a clinical trial: https://youtu.be/67w3zY-c0Zk. We also publish **scientific information in the appropriate international journals so that it builds consensus across our community and is peer reviewed and globally available** for researchers, clinicians and patients.
3. **Support research:** with limited funds and fundraising capability, we choose to focus our efforts to **inspire and facilitate collaborative behaviours such as information and resource sharing to facilitate and accelerate innovative ways of working and the development of new treatments and knowledge.** For example, alport uk continues to facilitate **the international research community coming together as the Alport Syndrome Alliance – a global network to advance treatments and knowledge for Alport Syndrome. alport uk use in-person and online workshops to share and exchange ideas** . This strategy aims to create a vibrant international research community that attracts more researchers and pharmaceutical or biotech companies interested in developing new treatments. These activities complement the strengths and activities of our colleagues in organisations such as: `o` Kidney Research UK – who raise money to fund specific UK Alport and kidney research projects eg elements of Rachel Lennon’s lab based at Manchester University.
`o` Alport Syndrome Foundation in the USA – who have more recently focused on very specific areas of Alport research that they prioritise eg relationships of aneurisms to Alport Syndrome, hearing and other topics at an early stage of development.
4. **Continued support of a UK research registry:** with significant investment made by Kidney Care UK and Kidney Research UK into The **National Registry of Rare Kidney Diseases (RaDaR)** – the UK Kidney Association’s (UKKA) initiative designed to pull together information from patients with certain rare kidney diseases - alport uk support this vital project by **encouraging patients, clinicians and kidney units to upload long-term clinical data into this database to enable natural history studies in the future to progress Alport Syndrome research** . This will give a much better understanding of how Alport Syndrome affects people. It will also speed up research. The value for:
- Alport patients: `o` Access to their clinical data online which records blood and urine results, medications and clinic letters.
- `o` Ability to be contacted about future potential research studies or patient information events
- `o` Contribute to the increase in knowledge about their condition
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
- Clinicians: `o` Share knowledge with other colleagues `o` Use RaDaR as part of a research study or clinical trial.
- 5. **Fundraising:** with a small number of people in the UK (compared with other countries with much larger populations) impacted by Alport Syndrome, awareness of the condition is limited and traditional fundraising by the public typically focuses on the key health areas of cancer, heart conditions etc. **We heartily encourage individuals and families living with Alport Syndrome to fundraise when inspired to do so, by providing support, encouragement and new branded merchandise** (eg t-shirts, badges, wrist bands, shaking tins etc) to enable them to achieve whatever challenge motivates them. This means that **we raise significant funds for each major project (eg an international workshop or a new website) or a programme of activities (information days) by applying for grants from larger charities or from pharmaceutical companies** . We specifically support large fundraising events each year eg a dinner with an auction, a major activity eg swimming the channel or cycling round Europe etc.
## **Highlights: achievements and performance this year**
**Engaging our community in the diverse locations with greatest need**
To be taken seriously as a rare disease community, by the pharmaceutical and biotech companies who develop treatments, we need an engaged patient community who understand the need for treatments and how vital engaging in clinical trials is for the development of treatments for generations to come. We have a number of different ways in which people living with Alport Syndrome engage across the UK and across the world. We specifically focus on and engage the larger communities in the UK and abroad, informed by statistics such as the population tables below which show a) the locations of largest groups of Alport patients across the UK and b) the countries that have the largest group of Alport patients. numbers of Alport patients if you assume that 80% of patients (typically with x-linked inheritance pattern) account for a prevalence of 1 in 10,000 in any population. The reality is that recent research by Gibson et al (2022) suggests the prevalence is closer to 1 in 2,300 in any population which obviously increases the market size for treatments as indicated by the tables over the page:
**Annual report 01 August 2024 to 31 July 2025**
Section D Achievements and performance
**A) Table showing locations of largest groups of Alport patients across the UK, based on prevalence in a city**
Data reference https://worldpopulationreview.com/countries/united-kingdompopulation
These figures guide our UK engagement. A practical example of this, is that we prioritise running information days in UK cities where there are the greatest potential number of Alport patients for example systematically **prioritising locations to date: London, Birmingham, Liverpool, Glasgow, Edinburgh, Cardiff, Manchester and Nottingham.**
## **B) Table showing countries with the largest groups of Alport patients across the world, based on prevalence in a country population**
Data reference https://worldpopulationreview.com/countries/united-kingdompopulation
These country populations focus our international engagement activities. alport uk invested time and engagement efforts to engage patients from China, Indonesia, Nigeria, Brazil, Russia, Japan. alport uk do this through clinical contacts in the countries, or social media and in-person international workshops in countries with larger populations of Alport patients. **To date we have patients and clinicians engaging in person or online from 66 countries** . Thanks to alport uk’s initial investment in 2014 to support patients engaging in China, the Chinese patients have now set up their own **Chinese Alport Syndrome Parents Association** which today is now one of the largest patient organisations in the Alport global community connecting so many diverse people across Asia and significantly reducing their feeling of isolation. alport uk continue to support and collaborate with this vital community of people living with Alport Syndrome.
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
## **Support network proactively increased**
Before the charity existed in 2013, it was typical that a family diagnosed with Alport Syndrome would never meet or talk to anyone outside their own family impacted by the condition. There was no support network and no mechanism for connecting individuals and families. People felt isolated. Through regular annual **national Alport Information Days** , our **web site** and closed Facebook page - **Alport Warriors** - and other social media pages (Instagram, X formerly Twitter), support networks developed and each year the community feels stronger, more connected and able to deal with issues as they arise and particularly as we work through challenges together. People feel more connected and less alone now. This infrastructure proved invaluable in supporting patients through the unknown stages of the pandemic and as we emerged beyond.
The closed Facebook community – **Alport Warriors** – is one of the ways alport uk proactively encourages peer support – people living with Alport Syndrome helping others in a similar situation. The carefully moderated group continues to grow and now numbers over 1227 members from all over the world, trusting and appreciating the excellent advice we get from our colleagues in the UK’s NHS. In 2019, there were 350 members. Each year we are contacted by more and more people from around the world as they are diagnosed with Alport Syndrome.
One practical way of supporting patients is with the **Don’t Wait Fund** – a fund that people living with Alport Syndrome can apply to for a grant of up to £250 to start a new activity: Over this year, we funded 6 people living with Alport Syndrome:
- Running trainers for a young post-transplant patient who has been selected for the World Transplant Games
- A day out for a mother about to have a transplant to experience a new activity with her young child
- A first gym membership for a newly diagnosed teenage girl
- A first gym membership for a newly diagnosed older teenage boy
- A treadmill for a young woman with declining kidney function
- A gym membership for a young woman on dialysis
A young post-transplant man, who has been selected for the World Transplant Games
**Annual report 01 August 2024 to 31 July 2025**
Section D Achievements and performance
**Key support network achievements this year**
**In collaboration with Dr Kar Hui Ng and National University Hospital Singapore, delivered ‘Shining a light on Alport Syndrome: a one-day workshop for Asia’, 20 August 2024**
In partnership with Ng Kar Hui, a Children’s Kidney Doctor from National University Hospital Singapore (NUHS) and National University Hospital and Shaw-NKF-NUH Children Kidney Centre we held our 8[th] workshop at NUHS in Singapore. We had over 130 participants from 22 countries across Asia Pacific with many participating for the first time, including 29 patients.
The workshop was phenomenal, and the agenda had an excellent flow of content. We heard about the different experiences across Asia which was inspiring. The talks about how you do genetic counselling etc set a standard that many would love to achieve in Europe. We also heard about the huge opportunities to find and diagnose people in other countries.
Following the workshop, a working committee was formed with a group of Asian nephrologists and geneticists who will write a guideline that is more specific to the low-resource setting. They hold regular productive online meetings and the guidelines are well underway. We have formed a WhatsApp peer support group for patients in Indonesia, Malaysia and Singapore.
## **Delivered an Alport information day in Nottingham, 5 July 2025**
74 people participated in the event, which included talks from experts on understanding Alport Syndrome, treatments, exercise, mental health and research updates. The children’s track included a talk with paediatric
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
nephrologist Martin Christian and hearing expert Dan Jagger, 3 hours of creative drama and games workshops, crafts, and a mobile creche for under 5’s. Feedback from patients:
_“This was so valuable to me, being able to connect with others and feel heard/understood. The presentations were so helpful and having that opportunity to speak through any concerns. I felt hopeful by the end of the day.”_
_“I found the connection on the day to be life changing for me as a person.”_
_“It was tremendously helpful. The combination of fun activities for the children, interaction with cutting edge experts, sharing stories with other families living with Alport, and being informed about what’s coming down the track, help us to go home knowing that we're supported and have hope for the future, with what can feel incredibly isolating.”_
|**Participant**
**numbers**|**Nottingham, July**
**2025**|
|---|---|
|Adults|53|
|Young adults|9|
|Older children and
teens,12+|3|
|Younger children, 0-
11|9|
|Total|74|
These in-person Alport Information Days, advertised via our social media and through RaDaR, combine a mix of information (from experts), social networking and getting to know the city we are in. The information days are organised around the country to attract diverse groups impacted by Alport Syndrome and target specifically the larger cities with large populations. The days particularly attract newly diagnosed individuals and families and connect them with others on similar journeys, whether as individuals, parents, young adults or children. We combine the activities with social activities particularly aimed at the young adults. The information day agendas are designed specifically to create a safe space
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
for people to ask any questions they may have of the experts, to connect with others and engage in understanding Alport better. The days are ‘immersive’, designed to support and attract a diverse group of people. Professional childcare is a key element of the day, so both parents and children get their questions answered and they have the opportunity to connect and meet with others impacted by Alport Syndrome.
## **Advocated for rare kidney disease at Connect4Children in Heidelberg, Germany**
Panel members from Spain, Italy and UK representing different rare kidney disease organisations: Hipofam, ASAL Onlus, Nephrotic Syndrome Trust and Alport UK.
Susie Gear was invited to be on the organising committee for this important EURORDIS Multi-stakeholder meeting for Paediatric Kidney disease - of clinicians, laboratory scientists and pharmaceutical representatives - to discuss how to run clinical trials with small cohorts of children with rare kidney diseases. Susie set up and moderated a patient panel of representatives from different rare diseases across Europe. From the left in the photo above: Katie Brown representing Alport UK, Megan Hawkes representing Nephrotic Syndrome Trust (UK), Elia Gali representing ASAL Onlus (Italy) and Susana Carvajal Arjona representing Hipofam, FEDERG, ERKNet ePAG, Spain.
**alport uk’s private Facebook page - Alport Warriors** - provides support to a group that increased to over 1200 members. Membership is supported by Wilma Calderwood whose steady hand ensures the group remains in a well-protected, safe space. Discussions are initiated by both regular and new contributors and cover such subjects as kidney donation, hearing, sight, drug trials, transplant successes, successes at the annual Transplant games, fundraising opportunities, celebrating birthdays, links from other Alport Facebook sites, fundraising activities, and a range of questions about Alport Syndrome, its’ symptoms and side effects. Connection with others who are in a similar situation is clearly
**Annual report 01 August 2024 to 31 July 2025**
Section D Achievements and performance valued by some people in the Alport community. Connection is not valued by all, so we aim to provide support for individuals or families in other ways to suit their needs. A large percentage of patients with Alport Syndrome face Chronic Kidney Disease (CKD) in their late teens or early 20s and will require dialysis or a transplant. The exact details of prognosis for the genetic mutations of these young adults are not yet known, so the young adults face an emotional ‘waiting game’ for their kidney function to start declining. Some describe it as a ‘timebomb’! The young adults find it most helpful to connect with young people of their own age – peers who provide information from their own personal experience - so they can learn from and mentor each other when facing these particularly challenging times such as declining kidney failure and transplants. This is one of the roles of the **Alport Avengers group** – a group of 18–35-year-olds that emerged and was set up on WhatsApp. If a young adult has a question or a parent of a young adult raises a question, alport uk offer membership of this vital group. We arranged a social event in Nottingham for the Alport Avengers to meet in person which they found incredibly valuable. They spent time variously talking, sightseeing and getting to know each other and, importantly, sharing experiences of Alport Syndrome. We continued the dissemination of information and offering support for both patients and carers, including: • **Answering enquiries emailed to alport uk** at info@alportuk.org and phone calls sent to our landline number of 01793 847264 and putting people in touch with experts to answer their questions, writing letters to support children’s needs at school or putting people in touch with other families to share stories and experiences. • **Sending out information electronically** – there was a high number of enquiries about newly diagnosed children living with Alport Syndrome, about hearing and about transplantation experiences. **Provision of information** With the help of our scientific advisors, alport uk continue to offer information and expert advice on our closed Facebook page – **Alport Warriors** - to the community to answer queries as they arise. This approach - informing people to enable them to take control and build resilience - is vital as our community has so many differing needs, many different age groups, at differing stages of kidney failure, undergoing different types of kidney replacement therapy and many patients and family members from other countries seeking advice. We are very proud of the alport uk team, how they anticipate queries, provide the advice and information to enable people to stay as calm as possible during complicated situations and writing letters to schools or employers to explain the needs of their employees with Alport Syndrome. We are incredibly proud of the patients, their positive and pragmatic approaches to looking after themselves and helping each other across the community at what continued to be a very concerning time long after the pandemic finished. As mentioned above in ‘Support’ above, the **Alport Avengers** group (18- 35 year olds) on WhatsApp continues to grow and the young adults
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
share the information they’ve learned from their individual journeys. The group is monitored to make sure the information is accurate and relevant.
**Young woman:** “I like the fact that it doesn’t feel too formal. It’s a group of friends, where you can ask questions, compare symptoms, discuss struggles, but also have a laugh! Without the group I think people could potentially feel more isolated and not have that space they can easily access! Sometimes posting on a social forum feels intimidating, so this is a nice balance :) “
**Young man:** “For me mainly, I love that we all feel comfortable sharing how we feel in real time, knowing that we're going to get a quick response from someone who fully understands the challenges we might be facing. It provides a level of reassurance and understanding that I (and I know many others!) never got while growing up.”
- With this young adult group, as the most critical group facing declining kidney function just at the time they are trying to leave home, build careers etc, their feedback increasingly indicates that short videos are the most useful way of sharing information. We now use short videos to explain Alport Syndrome and to share patient stories. Our most shared videos were filmed and produced for alport uk by filmmaker, Sam Clarke who is also a young person living with Alport Syndrome.
- Sam also helps alport uk by filming a series of 2-3-minute documentaries about Living with Alport Syndrome. These short films document the highs and lows of living with Alport Syndrome. The films are invaluable communication materials that engage the wider community in what it is really like to live with Alport Syndrome. We are very grateful to the following people that Sam filmed about their journeys and living with Alport Syndrome: **Mark and Pippa -** https://youtu.be/OzYP42oXTAg A partner’s perspective: https://youtu.be/WJmCEqjUFYM **Ryan Wicks** - https://youtu.be/67w3zY-c0Zk -
- **Professor Colin Baigent** https://youtu.be/whFRZfBUDs0 **Katie Brown** - https://youtu.be/DJTKNLWQfmo **Lesley Forrest** - https://youtu.be/RoDWE-8Ck60 **Jospeh McLean** - https://youtu.be/4bz5-tK6m6w.
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
- **Patients inspire Alport Syndrome research,** a collaboration between alport uk and University of Manchester: https://youtu.be/77p7nzKz6nc
- **Highlights from The 2019 International workshop on Alport Syndrome** , Siena, October 2019: https://youtu.be/QH8mDTmKaVU
- **Highlights of Podocyte 2021** , a film made by young patients who have podocyte-related kidney conditions, Manchester, July 2021: -
- https://youtu.be/3 ZDm2CR8Ow
- **Highlights from The 2024 International workshop on Alport Syndrome** , Cyprus, March 2024: https://youtu.be/HnwKsDMms8A
- **Highlights** : **Shining a light on Alport Syndrome: a one-day workshop for Asia Pacific** 20 August 2024: https://youtu.be/DX59r0yALQ0
- **Highlights from the Nottingham Alport information day** : -
- https://youtu.be/ Feg80vFmRc
We are very grateful to patient Sam Clarke for making these upbeat and very professional videos. Sam is exemplary in that he also is willing to collaborate with other Alport patients on the content and editing. Sam himself gets value from meeting members of the Alport community and he talks openly about how it helps his own mental health and living with the ‘timebomb’ of when his own kidneys would fail. The work on these videos means we have a very engaged young adult group who feature on the videos telling their stories and sharing their opinions, plus doing some of the interviews to create the content. The success of content and style of these videos is because they are designed and filmed by people living with Alport Syndrome _for_ people living with Alport Syndrome. As a result, the videos are often watched by clinicians and researchers and admired for their inspiration. In addition to being excellent providers of information, the videos also inspire many others who watch them. The videos demystify what is it is like to live with Alport Syndrome and why patient/research scientist collaboration on Alport research is so important. In addition to being good information providers, the videos are excellent emotive marketing tools to potential funders and give a lot of positive hope for the community and people who want to find out more about it.
When someone is diagnosed with Alport Syndrome, some of the regional genetics units have a small leaflet giving some summary details about the condition and our alport uk leaflets. Beyond this, there is an array of information one can find on the web, but it is hard to decipher what is medically correct or up to date. On our website or available to email are:
- **A summary leaflet for Alport UK** to encourage people to get in touch with us – this is now handed out at the genetics units when people are newly diagnosed with Alport Syndrome. It was also sent out, along with laminated posters with our contact details on, to all the main adult and children’s kidney units around the country to advertise where to find out information about Alport Syndrome
- **A dictionary of scientific terms** to help patients learn more about the biology of Alport Syndrome, so when their clinicians explain things, they understand a bit more about what they are talking about as it is so hard to pick much up in a short clinic appointment.
- **Definitions of related rare renal diseases** – Nephrotic Syndrome, IgA Nephropathy, Membranous Nephropathy and Focal Segmental Glomerular Sclerosis (FSGS) that sometimes overlap with Alport Syndrome or people can be diagnosed with more than one disease or if people are misdiagnosed.
**Annual report 01 August 2024 to 31 July 2025**
Section D Achievements and performance • **Videos available through our website** (www.alportuk.org), on our YouTube @alportuk channel, and a special section on Alport - Syndrome on www.healthtalk.org (http://www.healthtalk.org/peoples experiences/long-term-conditions/alport-syndrome/topics ) of our key experts talking about specific aspects of Alport Syndrome. Topics are varied about all aspects of living with Alport Syndrome and include: Genetics, An introduction to Alport Syndrome, Hearing and hearing aids, caring for people with Alport Syndrome, medication, women with Alport Syndrome etc. • **Our website remains an invaluable resource** . We are currently fundraising to improve our online information. We intend to update www.alportuk.org to make the information clearer and more accessible and to answer the questions we have received over the last few years or so through our closed Facebook page, Alport Warriors. • **Information about new clinical trials** that patients can sign up to is shared through our website ‘Latest news’ section, through our closed Facebook page (Alport Warriors) and through directly emailing our database of patients. alport uk specifically do not recommend any trials, but signpost people to the most up to date information and encourage them to discuss it with their own clinicians who can discuss the relevance of the trial with them, knowing their personal situation. **Supporting or driving research** With limited funding available for rare kidney disease research, alport uk’s strategy is use our small amount of funding to facilitate a virtual Alport research collaborative giving support and encouragement to scientists and to drive towards deadlines – what we call the ‘ **oil to lubricate the Alport research ecosystem** ’ to accelerate research. Instead of funding a specific project we invest considerable time and our limited funds to get the research community together at international workshops to enable them to work together to set the research programme and create a vibrant and innovative research community that attracts more researchers and pharmaceutical companies interested in developing new treatments. The emerging innovative and vibrant global network – the Alport Syndrome Alliance - is advancing treatments and knowledge. **Over eight international workshops, the clinicians and laboratory scientists featured over 400 new research projects. Many went on to publish their findings in international journals** . Alport UK is closely involved in an exciting research project – the Alport Research Hub, a Manchester-based collaboration between Kidney Research UK and the Stoneygate Trust. The hub is directed by **Professor Rachel Lennon** from the University of Manchester, in collaboration with **Professor Daniel Gale** from University College London and **Professor Neil Turner** from the University of Edinburgh, all three of whom are Trustees of alport uk. The hub was launched in 2022 and aims to deliver a world leading research programme. Using patient data along with a new platform of technologies to test new treatments such as gene therapy, researchers aim to deliver major results within five years; this acceleration in research is extremely
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
exciting for Alport patients, researchers and clinicians. Here is a short film that explains the Hub: https://youtube.com/shorts/4SKzPemRYCU. As part of the need to provide people living with Alport Syndrome, with the most up to date information, we often provide links to the **series of** over **36 international Alport online workshops** , which were run and moderated by our young adult Alport patients. The workshops are all listed on alport uk’s YouTube channel @alportworkshops: https://tinyurl.com/y9cuhgby . **Subjects covered include: Transplantation experience, hearing, eyes, genetics and family planning** , and spotlights on labs around the world researching Alport Syndrome. **Building on the Alport research indicators from 2019**
In the 1990s, groups of leading clinicians, academics and scientists regularly met to discuss topics related to Alport Syndrome. They published a number of key papers about Alport Syndrome, but the regular meetings stopped. In 2012, alport uk commissioned a web audit of people publishing material on Alport Syndrome through to the current day and prepared a report on the status of research into Alport Syndrome. This report was used to identify the missing areas of activity and needs for research including:
- A shared international strategy and plan for Alport Syndrome research
- • New research ideas and projects to develop new treatments and therapies and more research generally
- Ways to reengage the leading experts in Alport Syndrome
- • Co-ordination of national patient registries
- The need to engage the pharmaceutical industry in developing new treatments
- How alport uk could complement the current contributions of other national patient organisations, for example the Alport Syndrome Foundation who currently run an excellent programme of seed funding for Alport research, commissioning projects each year
- How Alport Syndrome is a model renal disease and that new treatments developed for Alport Syndrome could help other patients living with kidney disease.
In 2019, to check on the performance of our investment to get researchers together through these workshops, alport uk circulated a simple survey with the Workshop Organising Committee members and their research teams (ie not the full Alport research community, just some of the key members) to understand the impact of the international workshops, emphasis on collaboration and how much research is now being done. Overall, the numbers indicate a very healthy research community to whom we are incredibly grateful for all they do to help with the awareness and understanding of Alport Syndrome by delivering:
- 242 new research projects featured at four international workshops
- 131 publications with the majority in international journals
- 18 book chapters
- 38 major grants to fund the ongoing research.
- • over 90% of the projects and publications were collaborative efforts.
- These survey results confirmed to alport uk that our efforts to drive collaboration and accelerate research are delivering the results we need. Indeed at the time of writing, **there are now over 400 new projects**
**Annual report 01 August 2024 to 31 July 2025**
Section D Achievements and performance **featured at international workshops since 2014.** The Alport research progress is accelerating and alport uk’s strategy to use workshops to drive Alport research is the right approach to both drive research and engage new communities to join the global network.
**Asia group guidelines: Recommendations on diagnosis and management of Alport syndrome in the absence of genetic results** Diagnosis of Alport can be challenging. Clinical features, such as haematuria and proteinuria overlap with other kidney conditions. When there is not genetic testing available, it is important to try to diagnose Alport as treating it requires different treatments to some of the other kidney diseases like Nephrotic syndrome or IgA nephropathy. This group have done a literature search and a Delphi survey of other members of the community to work up some ways of more accurately diagnosing Alport in the absence of genetic testing.
**Supporting the set up of new international patient groups** When Alport UK run a workshop in a new region, they work with the local clinical teams to get patients engaged in the area. With the workshops in Singapore and the upcoming workshop in Beijing, Alport UK focused on engaging patients in Asia. We can proudly share the following progress on new patient organisations:
- **Formed in Japan and Hong Kong** – Welcome and thanks to the leaders setting up Alport Japan and Alport HK
- • **Progressing conversations with Hungary and Brazil** as we begin the next planning of our next two workshops. The Hungary workshop will be in 2026 in partnership with ERKNet and the Brazil workshop is planned for 2027.
**Annual report 01 August 2024 to 31 July 2025**
Section D Achievements and performance
Tomoko Horonuchi, a clinician in Japan presents to the first meeting of the Japan patient organisation in Kobe, Japan
## **The 2025 International Workshop on Alport Syndrome, Beijing**
The next international workshop on Alport Syndrome will be in Beijing in September 2025, hosted by and organised in collaboration with Professor Jie Ding and her colleagues at Peking University First Hospital and the Alport patient group in China.
**Annual report 01 August 2024 to 31 July 2025**
## Section D Achievements and performance
## **Support of a UK research registry**
In parallel to alport uk being set up, the then called UK Renal Association (now called UK Kidney Association - UKKA) established a working group on Alport Syndrome, funded jointly by Kidney Research UK and Kidney Care UK (previously British Kidney Patient Association) to support the development of a national renal registry of patients, called RaDaR. RaDaR. Some of the trustees from alport uk contribute to the working group on an ongoing basis to devise ways of promoting RADAR to patients and clinicians across the UK to increase the number of patients and patient records online as this will provide invaluable data for research to understand the natural history of Alport Syndrome. At the time of writing, RaDaR has over 1,200 patients registered (compared with the 1,000 registered in the previous year) as having Alport Syndrome and with some clinical data going back 30 years. alport uk specifically contribute to the support of this UK research registry of patients and an international alliance of patient registries by:
- Promoting the importance of RaDaR to patients at Alport information days, along with information about the value of RaDaR to research.
- Making the research registry a central part of the national contribution to international efforts to collaborate on research coming out of the 2014, 2015, 2017, 2019, 202, 2022 and 2024 International Workshops on Alport Syndrome and proposing to for there to be significant topics on it at the 2025 workshop.
- Supporting the enrichment of data as part of the programme of the Alport Research Hub, including chasing up the transfer of historical genetic data that transferred from Guy’s Hospital to the Bristol genetic testing labs when they took on the testing service.
- Continuing the development of the UK’s contribution to an international alliance of Alport Syndrome research. An ‘alliance’ is necessary as long-term there are not enough patients in the UK for clinical trials and so pharmaceutical companies will want to do trials in a number of different countries to try new therapies. We work with other national patient organisations to build the Alport Syndrome Alliance to help the Alport community act as one global network focused on advancing treatments and knowledge, with one voice.
## **Generation Study: Genomics England newborn screening programme**
Following successful advocacy from Alport UK trustees and patient representatives, Alport Syndrome was added to the list of conditions which Genomics England will test for in the Newborn Genomes Programme: https://www.genomicsengland.co.uk/initiatives/newborns Alport Syndrome was added as early diagnosis can lead to earlier management and better outcomes. Alport UK are preparing to provide support and information to parents of newly diagnosed babies.
If anyone reading this annual report is interested in more information or to get involved or support us with activities or fund raising, please email info@alportuk.org or call us on 01793 847264.
**Annual report 01 August 2024 to 31 July 2025**
Section D Achievements and performance
**Section E Financial review**
|**Brief statement of the**
**charity’s policy on reserves**
**Details of any funds materially**
**in deficit**|Reserves from fundraising are kept in separate Barclays bank savings
accounts, labelled for their specific use and to make sure restricted and
unrestricted funds are used appropriately. For example, for:
-
**Information days**(Alport UK Meetings)
-
**UK Development of information, website and marketing material**
(Alport UK)
-
**Facilitating the International Workshops on Alport Syndrome**
(Alport UK Research)
-
**Supporting patients take up a new sport or activity**(Don’t Wait
Fund)|
|---|---|
||No funds in deficit|
## **Further financial review details (Optional information)**
|You**may choose**to include
additional information, where
relevant about:
•
the charity’s principal
sources of funds (including
any fundraising);
•
how expenditure has
supported the key objectives
of the charity;
•
investment policy and
objectives including any
ethical investment policy
adopted.|alport uk’s principal sources of funds this year were again more diverse
than in the previous year:
-
Personal donations – limited this year
-
Personal fund-raising activities, such as the afternoon tea and pop-up
shop.
-
JustGiving pages for remembrance and for sponsorship of various
activities that our community get involved in to raise funds for alport
uk.
-
Social media fundraising pages eg Facebook giving for birthdays
-
PayPal donations to Alport UK
-
Sales of Christmas cards and a wider variety of merchandise such as
hoodies, t-shirts, water bottles etc
-
Standing orders from a couple of very supportive patient families
-
Customised shaking tins located in retail venues
-
Donations from larger charities or foundations for specific activities
and particular thanks to**BBC Children in Need, CHK Foundation,**
**The Stoneygate Trust,** **The Story of Christmas Trust, Kidney**
**Care UK, Kidney Research UK, The Amelia Chadwick Trust,**
**Liverpool Charity and Voluntary Services**
-
‘Shining a light on Alport Syndrome: a one-day workshop for Asia’
was funded by:**NUHS Centre for Precision Health, Professor**
**Alexander Morton, NUS Saw Swee Hock School of Public Health,**
**Anonymous donors and supported by Stoneygate Trust**
-
Donations from**The Worshipful Company of Dyers**. With thanks to
Alice and Sebastian Cooper.
Grants given by a number of pharmaceutical companies: alport uk are
very grateful to the support from**Bayer, Calliditas and Natera,**plus
**CORD**(specifically for the translation headsets) and a number of local
Chinese sponsors who pay directly for the China costs such as the venue
and catering.
As funds were all allocated to specific activities that support our key
objectives this year, there was no opportunity for investment during this
accounting period.|
|---|---|
**Annual report 01 August 2024 to 31 July 2025**
## **Section F Other optional information**
None
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK**
**Report and Financial Statement For the year ended 31[st] July 2025**
**Charity number: 1154774**
**Shilton Accounting Services 1[st] Floor, 1 The Clock House Brize Norton Road Carterton OX18 3HN**
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK Charity number: 1154774 Legal and administrative information**
Charity name: Alport UK Charity registration number: 1154774 Type of organisation: Charitable Unincorporated Organisation Registered office and business: PO Box 329 Cirencester Gloucestershire GL7 9JA Trustees: Professor Frances Flinter Professor Danny Gale Susie Gear Professor Rachel Lennon Amanda McLean Alex Tidey Alice Turner Professor Neil Turner Accountants: Shilton Accounting Services Certified Practising Accountants
1[st] Floor, 1 The Clock House Brize Norton Road Carterton OX18 3HN
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK Charity number: 1154774**
## **Independent Examiner’s report to the Trustees of Alport UK**
I report on the accounts of the Charity for the year ended 31[st] July 2025 which are set out below. **Respective responsibilities of trustees and examiner.**
The charity’s trustees are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year (under section 43(2) of the Charities Act 1993 (the 1993 Act) and that an independent examination is needed.
## It is my responsibility to:
- a) Examine the accounts (under section 43(7)(b) of the Act.
- b) To follow the procedures laid down in the General Directions given by the Charity Commissioners (under section 43(7)(b) of the Act.
- c) To state whether particular matters have come to my attention.
## **Basis of independent examiner’s report.**
My examination was carried out in accordance with the General Directions given by the Charity Commissioners. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence which would be required in an audit and consequently I do not express an audit opinion on the accounts.
## **Independent examiner’s statement.**
In connection with my examination, **no** matter has come to my attention
1. Which gives me reasonable cause to believe that in any material respect, the requirements of a) to keep proper accounting records in accordance with section 41 of the 1993 Act and b) to prepare accounts which accord with the accounting records and to comply with the requirements of the Act, have not been met.
2. To which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.
David Cuthbertson – ICPA Cert Acc (Open) 22[nd] May 2026 Shilton Accounting Services 1[st] Floor 1 The Clock House Brize Norton Road Carterton OX18 3HN
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK**
## **Charity number: 1154774**
## **Director’s report for the year ended 31[st] July 2025**
The trustees present their report and financial statement for the year ended 31[st] July 2025.
**Objects** – The relief of sickness and the promotion of health of those people suffering from Alport Syndrome, in particular, but not exclusively by:
- a) The establishment and facilitation of a support network for Alport Syndrome patients, carriers, their families and carers;
- b) The provision of information on Alport Syndrome;
- c) The support of research into Alport Syndrome both in the UK and internationally;
- d) The support of a research registry in the UK and an international alliance of national registers.
**Governing document** – the charity is governed by a constitution based upon a Charity Commission document that was adopted on 27[th] November 2013. A copy of the full governing document can be obtained from the charity.
**Trustees** - The overall responsibility of the organisation rests with the Board of Trustees. The selection of Trustees is designed to supplement the existing skills and expertise of the board and is governed by an informal skills assessment. The appointment of trustees is made in accordance with the constitution.
**Risk assessment** – Disclosure and Barring checks are carried out for all appropriate trustees, staff and volunteers. The Trustees have examined the major strategies, business and operational risks which the charity faces and confirm that systems have been established to enable regular reports to be produced so that the necessary steps can be taken to minimise these risks.
**Public benefit statement** – Alport UK is a patient-led organisation dedicated to facilitating a support and information network for all those affected by Alport Syndrome. Our vision is to ensure that all individuals and families with Alport Syndrome feel empowered to enjoy the best quality of life. This creates public benefits in health and community cohesion.
**Reserves policy** – The Trustees are actively trying to build reserves, with a view to being able to better support patients and facilitate international research collaboration. Minimum reserves are kept to cover 6-12 months of salaries and outgoings. In the event that reserves reach more than 24 months commitments, trustees will review.
This report was approved by the Trustees on 18 May 2026 and signed on its behalf by
**Susie Gear**
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK Charity number 115774**
## **Statement of Financial Activities (including Income & expenditure Account) For the year ended 31[st] July 2025**
||**Restricted**|**Unrestricted**|**Total**|**2024**|
|---|---|---|---|---|
|**Income**|||||
|Donations/Sponsors||139,689|139,689|122,831|
|Delegate fees||17,890|17,890|24,549|
|Fundraising/merchandise||11,141|11,141|3,685|
|Other income||9,872|9,872|3,202|
|**Total Income**|**0**|**178,591**|**178,591**|**154,267**|
||||||
|**Expenditure**|||||
|Employee costs||52,949|52,949|42,969|
|Bank & service charge||152|152|114|
|Fundraising/Merchandise|717|3,322|4,039|0|
|Direct Events costs||2,070|2,070|21,299|
|Brandedgoods|||0|3,621|
|Administration||1,074|1,074|1,044|
|Travel & subsistence||62,964|62,964|61,625|
|Internet/website||2,430|2,430|3,083|
|Marketing||17,010|17,010|13,027|
|Insurance||736|736|726|
|Subscriptions||3,307|3,307|1,889|
|Bursaries/grants||1,954|1,954|1,932|
|Others||12,963|12,963|2,879|
|Accountants fees||1,288|1,288|1,288|
|**Total Expenditure**|**717**|**165,738**|**166,679**|**155,496**|
||||||
|**Net movement**|(717)|12,853|12,136|(1,228)|
||||||
|**Transfers**|0|0|0|0|
||||||
|**Opening Balance**|20,769|25,703|46,472|47,700|
||||||
|**Closing Balance**|**20,052**|**38,556**|**58,384**|**46,472**|
There are no recognised gains or losses other than in the Statement of Financial Activity.
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK Charity number 115774**
## **Balance Sheet as at 31[st] July 2025**
||**Notes**|**2025**|**2024**|
|---|---|---|---|
|||**£**|**£**|
|**Fixed assets**||**3,075**|**3,075**|
|||||
|**Current assets**||||
|_Cash at bank_|**4**|**56,309**|**44,397**|
|||||
|**Total Current assets**||**56,309**|**44,397**|
|||||
|**Current liabilities**||||
|_Creditors falling due within 1 year_|**5**|1,000|1,000|
|||||
|**Net current assets**||**55,309**|**43,396**|
|||||
|**Assets less liabilities**||**58,384**|**46,472**|
|||||
|**Represented by**||||
|_Restricted funds_||20,052|20,769|
|_Unrestricted funds_||38,332|25,703|
|||||
|**Total funds**|**6**|**58,384**|**46,472**|
|||||
## **Signed on behalf of the charity’s trustees**
## **Date:** 18 May 2026
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK Charity number: 1154774**
## **Notes to the financial statements For the year ending 31[st] July 2025.**
## **1. Accounting policies**
## **a. Basis of accounting**
The financial statements have been prepared under the historic cost convention with items recognised at cost or transaction value unless otherwise state in the relevant notes to these accounts. The financial statements have been prepared in accordance with the Statement of Recommended Practice: Accounting and reporting by Charities preparing their accounts in accordance with Financial Reporting Standards applicable in the UK and Republic of Ireland (FRS102) issued on 16[th] July 2014 and the Charities Act 2011. The trust constitutes a public benefit entity as defined by FRS102.
## **b. Going concern**
The trustees consider that there are no material uncertainties about the trust’s ability to continue as a going concern.
## **c. Fund accounting**
Unrestricted funds are available for use at the discretion of the trustees in furtherance of the general objectives of the charity. Restricted funds are subject to restrictions on their expenditure imposed by the donor or through the terms of an appeal.
- **d. Income resources**
All incoming resources are included in the statement of financial activities when the charity is entitled to the income and the amount can be quantified with reasonable accuracy. The following specific policies are applied to particular categories of income:
Voluntary income is received by way of grants, donations and gifts and is included in full in the Statement of financial activities when receivable.
Grants, where entitlement is not conditional on the delivery of a specific performance by the charity, are recognised when the charity becomes entitled to the grant.
Donated services and facilities are included at the value to the charity where this can be quantified. The value of services provided by volunteers has not been included in these accounts.
Investment income is included when receivable.
Income resources from charitable trading activity are accounted for when earned.
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK Charity number: 1154774**
## **Notes to the financial statements For the year ending 31[st] July 2025.**
## **e. Resources expended**
Expenditure is recognised on an accrual basis as a liability is incurred. Expenditure includes any VAT which cannot be fully recovered, and is reported as part of the expenditure to which it relates:
Costs of generating funds comprise of the costs associated with attracting voluntary income and costs of trading for fund raising purposes.
Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.
Governance costs include those costs associated with meeting the constitutional and statutory requirements of the charity and include accountancy and legal fees.
All costs are allocated between the expenditure categories of the SoFA on a basis designed to reflect the use of the resources. Costs relating to a particular activity are allocated directly, others are apportioned on an appropriate basis.
## **2. Staff costs**
The charity employed an average of two members of staff in the financial year.
## **3. Trustee remuneration & related party transactions.**
The trustees all give freely of their time and expertise without any remuneration or other benefit in kind. Expenses incurred on behalf of the charity are reimbursed at cost.
**Annual report 01 August 2024 to 31 July 2025**
## **Alport UK Charity number: 1154774**
## **Notes to the financial statements For the year ending 31[st] July 2025.**
## **4. Cash at bank.**
|**Cash at bank.**||
|---|---|
|Barclays General Account XXXXX405|31,425.39|
|Barclays Research Account XXXXX642|2,897.69|
|Barclays Don’t wait Account XXXXX210|16,472.70|
|Caxton FX|5,513.09|
|PayPal|0|
|**Total**|**56,308.37**|
**5. Creditors: Amounts falling due within one year** Accounting fee accrual £1,000
## **6. Movement in funds**
||Opening
balance|Incoming
resources|Outgoing
resources|Balance
31stJuly 2025|
|---|---|---|---|---|
|Restricted|£20,769|0|717|20,052|
|Unrestricted|£25,703|178,591|165,738|38,556|
|**Total**|**£47,699**|**178,591**|**166,679**|**58,384**|
**Annual report 01 August 2024 to 31 July 2025**