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2022-12-31-accounts

Registered number 06653373

International Gaucher Alliance Limited

Report and Accounts

31 December 2022

Registered Charity Number 1192011 Company Registration Number 06653373

International Gaucher Alliance Limited Report and accounts Contents

Page
Reference and administrative details of the charity 1
Trustees' Annual Report 2-11
Independent Examiner's Report 12-13
Statement of Financial Activities 14
Statement of Financial Activities prior year 15
Balance sheet 16
Notes to the accounts 17-22

International Gaucher Alliance Limited Company Information

Trustees

Aviva Fisher Rosenberg Irena Znidar Biljana Jovanovic Kristiyan Dimitrov Suyog Sathe Dr Yoram Muller (resigned 22 March 2022) Francisco Carreiro (appointed 9 May 2022) David Ohana (appointed 9 May 2022, resigned 13 February 2023) Aimeé-Kate Bosch (appointed 9 May 2022) Sara Khan (appointed 19 January 2022) Diana Paulina Pena Aragon (appointed 19 January 2022)

Secretary

Kristiyan Dimitrov

Independent Examiner

Rayner Essex LLP Chartered Accountants Faulkner House Victoria Street St Albans AL1 3SE

Registered office

86-90 Paul Street London EC2A 4NE

Registered Charity Number 1192011

Registered Name of the Charity International Gaucher Alliance Limited Company Registration Number 06653373

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International Gaucher Alliance Limited Company limited by guarantee registered number: Registered charity number: 1192011 Trustees’ Annual Report

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The Trustees present their Report and Accounts for the year ended 31 December 2022, which also comprises the Directors' Report required by the Companies Act 2006.

Reference and administrative details

Legal structure of the charity

The charity is constituted as a company limited by guarantee, registered under the Companies Acts . The governing document of the charity is the Memorandum and Articles of Association establishing the company under company legislation.

There are no restrictions in the governing documents on the operation of the Charity or on its investment powers other than those imposed by Charity Law.

By operation of law, all trustees are directors under the Companies Act 2006 and all directors are trustees under Charities legislation and have responsibilities, as such, under both company and charity legislation.

The trustees are all individuals.

The principal operating address of the charity is:

86-90 Paul Street London EC2A 4NE

The registered office of the charity for Companies Act purposes is the same as the operating address shown above.

The Trustees who served during the year were:

Aviva Fisher Rosenberg Irena Znidar Biljana Jovanovic Kristiyan Dimitrov Suyog Sathe Francisco Carreiro (appointed 9 May 2022) Aimeé-Kate Bosch (appointed 9 May 2022) Sara Khan (appointed 19 January 2022) Diana Paulina Pena Aragon (appointed 19 January 2022) Dr Yoram Muller (resigned 22 March 2022) David Ohana (appointed 9 May 2022, resigned 13 February 2023)

All trustees are also members of the charity.

Objects and activities of the charity

The purposes of the charity

The International Gaucher Alliance Limited ("IGA") is an international umbrella group representing the interest of Gaucher patients and those of not-for-profit Gaucher patient groups as well as rare disease groups throughout the world.

The IGA's vision is 'A world where all Gaucher patients have access to the treatment and care they need and there is a possibility of a cure'.

The IGA has the mission to be the global voice for Gaucher patients and their families:

• to empower its members

• to advocate on behalf of Gaucher patients to ensure that the Gaucher research agenda is focused on patients’ unmet needs

• to take collective action to address challenges Gaucher patients worldwide face in accessing early diagnosis and optimal treatment and care

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The IGA’s Strategic imperatives seek to achieve a strong voice for Gaucher patients through collaboration and partnership.

The main activities undertaken in relation to those purposes during the year

The IGA is a patient-led international organisation that has become the ‘go to’ global voice for over 90% of the Gaucher community and has built its reputation through listening to and delivering outcomes that have impacted on patients and their carers’ lives.

In 2022 the IGA welcomed two new Members to the IGA with Peru and Argentina joining, making our membership 58 countries. Together the CEO Tanya Collin-Histed; our staff team Angel Jones, Harry Albright and Vesna Aleksovska work with the IGA Board towards achieving our mission – a better quality of life for patients with Gaucher disease and a better world for them and their families. This is achieved through communicating/collaborating globally with stakeholders to ensure that the patient voice is heard and at the heart of all decisions and actions via meetings, conferences, and other projects.

In 2022 the IGA held a members’ meeting representatives and volunteers face to face and virtually in Rotterdam, the Netherlands. It was a wonderful experience to finally, after all challenges and difficulties with the COVID pandemic, meet with our dear friends who work alongside us to achieve our goals.

The IGA Board of Directors are all volunteers and give their time tirelessly to improve patient outcomes, and break down barriers across the world, increase standards of care and gain a better understanding of unmet needs through patient centred projects, collaborative working groups, educational webinars, and scientific meetings.

2022 saw new clinical trials for Gene Therapy, and with a number of different mechanisms it is important to ensure that the patient community truly understands Gene Therapy, its possible opportunities, and the challenges. The IGA is working collaboratively to develop an educational programme for our community.

The focus of International Gaucher Day 2022 was the management of Gaucher Disease, focusing on the whole person beyond treatment for the physical symptoms.

Recognising our global role and responsibility, in 2022 we strived to provide translations of our work in many areas including webinars and during our biennial meetings and surveys; we commit to continue this and, going forward, will be providing more languages in partnership with our volunteer translators and Member organisations.

The Trustees confirm that they have had regard to the guidance issued by the Charity Commission on public benefit.

The main achievements and performance of the charity during the year

VOLUNTEER PROGRAMME AND TRANSLATIONS

Our new Projects Officer reorganised and streamlined the Volunteer Programme, bringing new people on board and ensuring that their time was used effectively, leading to a year-on-year increase in time volunteered, and increased output in areas such as translations.

Expanding our volunteer programme has helped us reach more people in different parts of the world, including by translating documents and supporting our regional managers.

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At the end of 2022, 45 volunteers from 40 different countries were involved in over 11 projects (almost all IGA projects in 2022 had volunteers working on them). They collectively volunteered for 2083 hours in total. Our volunteers were recruited through advertisements on social media, conferences, and events, and some of them were invited by other volunteers, staff, or board members.

Thanks to volunteers we were able to translate many materials into Arabic, Spanish, French, German, Japanese, Chinese – and with that to reach out to families and patients around the world.

Volunteer activity also included the home therapy project, the older generation project, Regional Manager Programme, GD1 guidelines, the self-management working group, switching, and monitoring of patients, non-comparable and biosimilar medicines, GARDIAN recruitment (through webinars, translation and sharing of materials), development of the new 2024-2029 IGA strategy, Scientific Advisory Committee, and the development of neuronopathic guidelines for care and support.

REGIONAL MANAGER PROGRAMME

Reviewing and reforming the IGA Regional Manager (RM) Programme continued with the process of recruiting volunteers to support the RMs. The RMs were able to gather a lot of information from many different countries that will help us in the realisation of activities in 2023. Now we are equipped with the necessary knowledge to move forward and do more in the countries where there are no patient groups or organisations but Gaucher patients.

The Regional Managers are the eyes and ears of the IGA and are responsible for working closely with key stakeholders such as patients, patient associations, doctors, industry, and policymakers; exploring and identifying new development opportunities; and identifying and addressing challenges faced by Gaucher patients in the region. A big part of the regional manager programme is to help improve diagnosis. We ended the year with RMs in Southeast Asia, the European regions1 and 2, the Central America 1 region, the Eastern Mediterranean region, and the African region.

WORKING GROUPS

In 2022 Members of the Board, staff and volunteers participated in the following working groups on behalf of the IGA -

•International Working Group on Gaucher Disease (IWGGD)

•Supportive care Global Alliance for Rare Diseases (GARD)

•Board Member of the Medical Expert Committee (MEC) - Takeda's Charitable Access Programme

•Gaucher Outcome Survey steering committee – Takeda

PUBLICATIONS

The IGA co-authored/was involved in the publications of the following reports, presentations, papers, and posters:

•Transformative effect of a Humanitarian Program for individuals affected by rare diseases: building support systems and creating local expertise: Orphanet – IGA CEO co-author, publication •Patient centered guidelines for the laboratory diagnosis of Gaucher disease type 1: Orphanet – Jasenka Wagner co-author, publication

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•Findacure, now Beacon, February 2022: Building an international patient group: achieving a global reach with limited resources – poster

•Lysosomal Storage Disorders, A practical Guide, Atul B. Mehta and Bryan Winchester, 2nd Edition, 2022: Patients’ Perspective; Chapter, pp.299- 307 – IGA CEO co-author, publication

•European Conference on Rare Disease (ECRD): Harnessing the power of patients: Developing and validating the Neuronopathic Gaucher Disease Patient Reported Outcomes(nGD-PRO) and Observer Reported Outcomes(nGD-ObsRO) to measure HRQoL in patients with Gaucher Disease Type 2 and Type 3 – poster

•Creation of the GARDIAN patient registry for neuronopathic Gaucher Disease Type 2 and Type 3: A collaborative approach – poster

•Global Genes: Creation of the GARDIAN patient registry: A collaborative approach to address the unmet needs of patients with neuronopathic Gaucher disease type 2 and type 3 – poster

•Understanding patient and parent/caregiver perceptions on gene therapy in Gaucher disease: an international survey: Freeline, Pfizer, Avrobio

ISPOR-The Professional Society for Health Economics and Outcomes Research:

•Addressing unmet needs of patients with neuronopathic Gaucher Disease Type 2 and Type 3: Creation of the GARDIAN patient registry – poster

•Patient Involvement in the Development of Outcomes Measures Specific to Neuronopathic Gaucher Disease Type 2 and Type 3 to Assess HRQoL Over the Disease Journey – poster

ISPOR-The Professional Society for Health Economics and Outcomes Research:

•Addressing unmet needs of patients with neuronopathic Gaucher Disease Type 2 and Type 3: Creation of the GARDIAN patient registry – poster

•Patient Involvement in the Development of Outcomes Measures Specific to Neuronopathic Gaucher Disease Type 2 and Type 3 to Assess HRQoL Over the Disease Journey – poster

International Working Group on Gaucher Disease biennial meeting:

•GARDIAN -presentation

•Procurement of treatment for Gaucher disease – presentation

NGD GUIDELINES

In conjunction with the IWGGD, the IGA are part of a working group that are developing a supportive care paper for neuronopathic Gaucher disease (nGD) which will be published on the IWGGD website, shared globally, and translated into several languages by the IGA.

HUMANITARIAN AID

In 2022, the IGA received requests for assistance to access treatment from patients, family members and doctors in the following countries: Afghanistan, Cuba, Ethiopia, Ghana, India, Jordan, Kenya, Morocco, Mozambique, Peru, Qatar, Mongolia, Sudan, Venezuela, Palestine, Rwanda, and Zimbabwe.

Sadly, there are a number of cases that have still not been resolved; this is due to several different challenges, including:

•The country of residence is not covered by certain company programmes

•There is a maximum quota per country, and this has been reached

•There is a challenge with treating adults due to eligibility

•Access into the country is restricted due to war and/or political challenges

•The process of getting free treatment into a country is lengthy and challenging

This includes patients in Afghanistan, Ghana, India (12), Jordan (4), Peru, Venezuela, Zimbabwe (2), Mongolia.

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Approved – 18 patients: India (7), Kenya (2), Morocco (2), Mozambique, Qatar (2), Sudan (2), Rwanda, Palestine

Deaths – sadly two patients lost their lives. One was very ill, and treatment did not reach the patient in time. In this case, access to diagnosis and awareness was essential; in the other case the patient died of another cause unrelated to Gaucher disease and had been doing very well on treatment. These patients were from India and Ethiopia.

In process – These cases are being processed and we anticipate that these patients will have access to treatment in 2023. Cuba (1), India (2)

Ukraine – The IGA were in touch with the Gaucher patient group in Ukraine after the war started and supported the companies that were treating patients to ensure access was still available to patients, either in Ukraine or to where they were now living.

The IGA works collaboratively with the three pharmaceutical companies that provide charitable treatment to Gaucher patients.

These are:

•Takeda Charitable programme: through the Medical Expert Committee (MEC) programme (the IGA is a member of the MEC) in 2022 a total of 35 patients was approved from Ethiopia, Kenya, Pakistan, Tanzania, Tunisia, and Sudan

•PfizerCares: seven patients approved with a further 3 in the pipeline (included in the figures above). •Sanofi ICAP: 11 patients approved for treatment (included in the figures above). Please note that this figure only includes those patients referred to Sanofi by the IGA to their programme and therefore does not represent the total number of other Gaucher patients that were approved by ICAP through other channels. These patients were from India and Ethiopia.

NON-COMPARABLE MEDICINES FOR GAUCHER DISEASE - A POSITION STATEMENT

The IGA began work to agree a position on non-comparable medicines for Gaucher disease on an international scale. This statement is the results of anxieties from our members and Gaucher patients and their families globally that are faced with being switched to a non-comparable medicine for their Gaucher disease after being on a licensed medicine for many years. This positioning statement outlines the International Gaucher Alliance’s (IGA) stance in relation to the use of ‘intended copies’ of enzyme replacement therapy (ERT) medicines as a treatment for Gaucher disease. These ‘copies’ are also known as non-comparables (the term used in this statement), due to the fact that they have not been directly compared to the original medicine in a clinical trial setting.

STRATEGIC PLAN

A working group was set up to develop the IGA's Strategic Plan for the next five years (2024-2029). This included a member’s survey and input from other community stakeholders including clinicians and representatives from the pharmaceutical industry. This included looking at whether we need to update our mission and objectives.

COMMUNICATIONS STRATEGY

A new website was brought online, incorporating new systems to make communications easier, including new ways of collating Country Reports, to collect data from our Members and Regional Managers to give us a much better understanding of challenges, unmet need, and access to care and treatment. We also improved the system for Humanitarian Aid requests.

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INTERNATIONAL GAUCHER DAY

Our 2022 campaign focused on a holistic approach to diagnosis and treatment with the theme Body Mind Soul Managing Your Gaucher Disease.

We shared the stories of patients from around the world, both in social media posts and in videos

We also shared the views of clinicians and others working in the field.

We made a total of 37 Facebook posts and another on 27 Instagram. We sent 26 Tweets and made 16 LinkedIn posts. We also shared videos in different languages. Members and partners also posted, both original posts on the theme and using our templates, with some translating the messages into their languages

IGA CELEBRATES 25 YEARS of IGA CEO BEING A PATIENT ADVOCATE

On Friday 18 November, the UK Gauchers Association and the IGA held receptions for IGA CEO Tanya Collin-Histed to celebrate her 25th anniversary of being a patient advocate for Gaucher patients around the world.

The UK GA event was a lunch attended by around 20 people, where Tanya was presented with an engraved fountain pen.

The IGA held a reception in the afternoon with people attending virtually from around the world as well as in person. Tanya received an engraved vase and a book of photos and reminiscences contributed by around 100 people from all over the world. Attendees including patients, carers, health care providers, researchers, and representatives of pharmaceutical companies spoke, paying tribute to Tanya and her accomplishments over the years.

BIENNIAL MEETING

On the weekend of 6-8 May, the IGA held its first Biennial Members meeting since the COVID pandemic in Rotterdam in the Netherlands. This was held as part of our empowerment through information and education project.

Over 40 people from around 30 countries, most in-person with a few online, attended. It was clear how happy people were to once again be able to meet face-to-face, something that hadn’t happened since 2018.

This was an opportunity for Members of the IGA to connect, give and receive updates on their work and the work of the IGA, take part in workshops and hear presentations from pharma companies and others working in the rare disease field. Dr Lucy McKay from Medics for Rare Diseases gave a presentation on her organisation’s work, and Barbara Sjouke MD PhD from the Amsterdam University Medical Centre spoke about gene therapy. Takeda, Sanofi, Freeline and Prevail shared the industry perspectives.

The meeting also gave recognition to the volunteers who serve the IGA in many capacities, including the Regional Managers and others who work so hard on our behalf.

OLDER GENERATION

The IGA cares about the older generation of people living with Gaucher disease. Most of this generation, irrespective of the type of Gaucher they have and older than 60, acquired consequences (physical, emotional, social etc) of the disease before the new treatments or without. The IGA sent out a survey to our member organisations analysed the data. Preliminary outcomes of the survey are as follows: the basics:

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International Gaucher Alliance Limited Company limited by guarantee registered number: Registered charity number: 1192011 Trustees’ Annual Report

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» 58 IGA member organisations were invited to respond ,23 IGA member organisations responded (40 %).

» 13 answered that they have no idea about the unmet clinical or non-medical needs of the older generation in their country, the rest didn’t answer.

The second survey towards individuals is now in the process of translating to several languages. Older Gaucher patients are defined as those of 60 years and older, irrespective of their GD type. The needs don’t limit themselves to medical issues, but also include issues like social ones. The survey for patients will be online in 11 languages.

GARDIAN

Gaucher Registry for Development, Innovation and Analysis of Neuronopathic disease (GARDIAN)

In 2020 the IGA set up a company called International GARDIAN Limited (IGL). IGL is wholly owned by the IGA, therefore the global Gaucher community will own and govern a global patient registry for Types 2 and 3 Gaucher disease.

GARDIAN will benefit patients and caregivers by increasing the understanding of the impact of the neurological manifestations of the disease, improve access to and achieve a timely diagnosis, inform better care, and support, and enable better targeted research and the development of better safer treatments.

GARDIAN was launched on April 25th, 2022, and is available in 8 languages UK English, US English, Arabic, Japanese, Chinese, German, Spanish, and French.

GARDIAN was presented at various meetings and conferences during 2022:

•3 webinars in Spanish (Peru, Argentina, Mexico), September – October 2022

•Gaucher family meeting, Italy, October 2022

•Gaucher family meeting, Canada, November 2022

•Central America forum on reference centres for rare diseases, November 2022

•LSD conference, Panama, October 2022

•Gaucher family meeting, Denmark, November 2022

•Gaucher Community Alliance family meeting, USA, October 2022

•Genetic Rare Immune Disorders Symposium, USA, October 2022

•Global Genes conference, September 2022 ISPOR, November 2022

•Rare disease conference, Austria, December 2022

•Webinars for UK, Egypt, Argentina, Spain, Mexico, Peru, Japan

To support the launch and take GARDIAN forward we have:

Appointed Tanya Collin-Histed as CEO to support the work of the IGL Board.

Formed a Scientific Advisory Board (SAB) to advise the Board of Directors of IGL on scientific and clinical matters, consider and approve research and data requests and contribute to the on-going development of GARDIAN for the benefit of the global patient community. The SAB met for the first time on the 29th of September.

Formed a Pharmaceutical Industry Working Group to regulate the relationship with pharmaceutical and biotech industries, define rules for sponsorship opportunities, define access and scope of access to non-identifiable, aggregated data stored and managed by GARDIAN and approve and/or partner with these organizations for scientific publication aligned with the main objectives of GARDIAN. The PIWG met for the first time on the 30th of November and has a membership from 7 companies: Avrobio, Freeline, Gain, Pfizer, Prevail, Sanofi and Takeda

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International Gaucher Alliance Limited Company limited by guarantee registered number: Registered charity number: 1192011 Trustees’ Annual Report

Formed the community working group to:

•Identify areas of research that GARDIAN could support that remain an unmet need for patients and caregivers and make recommendations to the Scientific Advisory Board.

•Be the voice of the patient and caregiver on GARDIAN, providing feedback on GARDIAN’s accessibility, community value and understanding of the registry and its purpose

•Empower patients and families to engage with and drive the direction of research and scientific advancement on nGD.

•Identify how GARDIAN can best provide feedback to the community on its activities and make recommendations to the Strategic Planning & Registry Development.

•Review the GARDIAN website content and make recommendations for its development

IN 2023 WE WILL CONTINUE TO:

Revise our Strategic Plan for the next five years to ensure that our values, vision, and mission remain relevant and that our activities and campaigns are effective, that we are serving our Members and Gaucher patients and caregivers around the world in the best way possible, and that we continue to improve the visibility and knowledge of Gaucher disease. In 2022 we consulted our community and other stakeholders, and in 2023 a working group will create a revised document for 2024 to 2029 based on the feedback.

Hold a Go with Gaucher symposium for young adult Gaucher patients, from IGA Member organizations, giving them a unique opportunity to meet their peers and develop their skills.

Continue our work with the older generation of Gaucher patients to have a better understanding of their clinical and non-medical needs and to detect unmet needs and improve their situation where we can.

Develop Best Practice switching and monitoring guidelines, in cooperation with the International Working Group on Gaucher Disease (IWGGD), that can be used by patients to take to their clinicians to ensure that if they are made to switch to a new medication this is done in the best and safest way possible for the patient.

Expand International Gaucher Day, with a theme based around diagnosis which will include a keynote lecture on the theme and a video to be broadcast on the day.

Structure, governance and management of the charity

The methods used to recruit and appoint new charity trustees

Every 2 years the IGA holds board elections in line with our Articles of Association. 8 weeks prior to each Biennial General Meeting a statement is sent to our Member organisations from around the globe which includes the number of vacancies on the board, a list of existing council members offering themselves for re-election, a nomination form for new candidates, a form of personal resume for completion by candidates, notification of the closing date for nominations which shall be at least 28 days after the date of despatch of the documents and a summary of the requirements for a valid nomination. If the number of nominations exceeds the number of vacancies an election will be held at the Biennial meeting to determine the successful candidates via secret ballot. By recruiting trustees from our member organisations only, we ensure that they are already engaged, knowledgeable on our work programmes and have experience that will be beneficial to their work as a Trustee.

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International Gaucher Alliance Limited Company limited by guarantee registered number: Registered charity number: 1192011 Trustees’ Annual Report

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Financial review

The charity's financial position at the end of the year ended 31 December 2022

The financial position of the charity at 31 December 2022 and comparatives for the prior period, as more fully detailed in the accounts, can be summarised as follows:-

Net income /(expense)
Restricted funds
Total funds
Unrestricted funds available for the general purposes of
the charity		 2022
2021
£
£
(41,826)
26,076
178,287
222,899
8,569
5,783
186,856
228,682

Financial review of the position at the reporting date, 31 December 2022

The trustees consider the financial performance by the charity during the year to have been satisfactory.

Specific changes in fixed assets are detailed in the notes to the accounts.

Policies on reserves

The Board of Trustees of the International Gaucher Alliance have agreed a general fund reserves policy of maintaining reserves equivalent to no less than six months of operating costs below which a meeting of the Trustees would be convened to formally discuss the issue. This policy currently reflects a minimum level of reserves of £100,857.

During the year the charity's reserves decreased by £41,826 and held reserves of £186,856 at 31 December 2022. The level of reserves is above the minimum level of reserves required under the agreed reserves policy.

We have also adopted a document on trustee competencies, and we undertake annual Board assessments, the results form part of an on-going training and development programme for the trustees.

Availability and adequacy of assets of each of the funds

The board of trustees is satisfied that the charity's assets in each fund are available and adequate to fulfil its obligations in respect of each fund.

Details of The Independent Examiner

Neil Heyes FCA - Independent Examiner (Senior and Statutory Auditor) Rayner Essex LLP Chartered Accountants Faulkner House Victoria Street St Albans AL1 3SE

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Statement of the Directors Trustees' Responsibilities

The charity's trustees are responsible for the preparation of the accounts in accordance with the terms of the Companies Act 2006, the Charities Act 2011 and the Charities (Accounts and Reports) Regulations 2008. Notwithstanding the explicit requirement in the extant statutory regulations,the Charities (Accounts and Reports) Regulations 2008, to prepare the financial statements in accordance with the SORP 2005, in view of the fact that the SORP 2005 has been withdrawn, the Trustees determined to interpret this responsibility as requiring them to follow current best practice and prepare the accounts according to the FRS 102 SORP (Statement of Recommended Practice for Accounting and Reporting by Charities) 2015, (as amended by the Bulletin issued in October 2018 and applicable to all accounting periods beginning on or after 1st January 2019), (The SORP).

In particular, the Companies Act 2006 and charity law require the Board of Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity as at the end of the financial year and of the surplus or deficit of the charity. In preparing those financial statements the Board is required to :-

The law requires that the trustees must not approve the accounts unless they are satisfied that they give a true and fair view of the state of affairs of the charity and of the surplus or deficit of the charity for the year.

The Trustees are also responsible for maintaining adequate accounting records which disclose with reasonable accuracy at any time the financial position of the charity and which are sufficient to show and explain the charity's transactions and enable them to ensure that the financial statements comply with the Companies Act 2006 and comply with regulations made under the Charities Act. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The Trustees are also responsible for the contents of the Trustees' report, and the statutory responsibility of the Independent Examiner in relation to the Trustees' report is limited to examining the report and ensuring that , on the face of the report, there are no material inconsistencies with the figures disclosed in the financial statements.

Method of preparation of accounts - Small company provisions

The financial statements have been prepared implementing the FRS 102 SORP (Statement of Recommended Practice for Accounting and Reporting by Charities) 2015, (as amended by the Bulletin issued in October 2018 and applicable to all accounting periods beginning on or after 1st January 2019), (The SORP), and in accordance with the Financial Reporting Standard 102, (effective 1st January 2016).

These financial statements have been prepared in accordance with the provisions in Part 15 of the Companies Act 2006. applicable to companies subject to the small companies regime.

This report was approved by the board of trustees on 19 September 2023.

Biljana Jovanovic (Sep 21, 2023 10:07 GMT+2)

Biljana Jovanovic Trustee Director

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International Gaucher Alliance Limited

Report of the Independent Examiner Report to the Trustees of the charitable company on the accounts for the year ended 31 December 2022

I report to the Trustees on my examination of the financial statements of the charitable company on pages 14 to 22 for the year ended 31 December 2022 which have been prepared in accordance with the Charities Act 2011 (the Act) and with the Financial Reporting Standard 102, (effective 1st January 2016) as modified by FRS 102 SORP (Statement of Recommended Practice for Accounting and Reporting by Charities) 2015, (as amended by the Bulletin issued in October 2018 and applicable to all accounting periods beginning on or after 1st January 2019), (The SORP), published by the Charity Commission in England & Wales (CCEW), and under the historical cost convention and the accounting policies set out on page 17.

Respective responsibilities of the Trustees and the Independent Examiner and the basis of

the report

As described on page 11, you, the charitable company's Trustees, who are also the Directors of the Company for the purposes of Company law, are responsible for the preparation of the financial statements in accordance with the Companies Act 2006, the Charities Act 2011 and all other applicable law and with United Kingdom Generally Accepted Accounting Practice, applicable to smaller entities, and for being satisfied that the financial statements give a true and fair view.

The Trustees consider that the audit requirement of Section 144(1) of the Charities Act 2011 (the Act) does not apply, and that there is no requirement in the memorandum and articles of the charity for the conducting of an audit, and that the accounts do not require an audit in accordance with Part 16 of the Companies Act 2006 and that no member or members have requested an audit pursuant to Section 476 of the Companies Act 2006. As a consequence, the Trustees have elected that the financial statements be subject to independent examination.

Having satisfied myself that the financial statements are not required to be audited under any legal provision, or otherwise, and are eligible for independent examination, it is my responsibility to:

a) examine the financial statements of the charity under Section 145 of the Act;

b) follow the applicable procedures in the Directions given by the Charity Commission under section 145(5)(b) of the Act.

Basis of independent examiner's statement and scope of work undertaken

Since the charitable company's gross income exceeded £250,000, the charitable company's examiner must be a member of a body listed in section 145 of the Act. I confirm that I am qualified to undertake the examination because I am an authorised member of one of the listed bodies.

I report in respect of my examination of the charity's financial statements carried out under s145 of the Act. In carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act setting out the duties of an independent examiner in relation to the conducting of an independent examination. An independent examination includes a review of the accounting records kept by the charitable company and of the accounting systems employed by the charitable company and a comparison of the financial statements presented with those records. It also includes consideration of any unusual items or disclosures in the financial statements, and seeking explanations from you, as Trustees, concerning such matters. The purpose of the examination is to establish as far as possible that there have been no breaches of charity legislation and that, on a test basis of evidence relevant to the amounts and disclosures made, the financial statements comply with the SORP.

The procedures undertaken do not provide all the evidence that would be required in an audit, and information supplied by the Trustees in the course of the examination is not subjected to audit tests or enquiries and does not cover all the matters that an auditor would consider in arriving at an opinion. The planning and conduct of an audit goes beyond the limited assurance that an independent examination can provide.

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International Gaucher Alliance Limited

Report of the Independent Examiner Report to the Trustees of the charitable company on the accounts for the year ended 31 December 2022

Consequently, I do not express an audit opinion on the view given by the financial statements, and in particular, I express no opinion as to whether the financial statements give a true and fair view of the affairs of the charity, and my report is limited to the matters set out in the statement below.

I planned and performed my examination so as to satisfy myself that the objectives of the independent examination are achieved and before finalising the report I obtained written assurances from the Trustees of all material matters.

Independent examiner’s statement, report and opinion

Subject to the limitations upon the scope of my work as detailed above, I have completed my examination and can confirm that:

The accounts of this charitable company are not required to be audited under Part 16 of the Companies Act 2006;

The gross income of the charitable company in the year ended 31 December 2022 appears to exceed the sum specified in Section 145(3) of the Act, namely £250,000, and that I am qualified to act as Independent Examiner in accordance with that section by virtue of my being a qualified member of Rayner Essex LLP Chartered Accountants and Statutory Auditors;

This is a report in respect of an examination carried out under 145 of the Act and in accordance with Directions given by the Charity Commission under section 145(5)(b) of the Act which may be applicable;

and that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

  1. accounting records were not kept in respect of the charity as required by section 386 of the Companies Act 2006 and section 130 of The Charities Act 2011;

  2. the financial statements do not accord with those records; or

  3. the financial statements do not comply with the applicable requirements concerning the form and content of accounts set out in section 396 of the Companies Act 2006 other than any requirement that the accounts give a 'true and fair' view, which is not a matter considered as part of an independent examination;

  4. have not been prepared in accordance with the methods and principles set out in the FRS 102 SORP (Statement of Recommended Practice for Accounting and Reporting by Charities) 2015, (as amended by the Bulletin issued in October 2018 and applicable to all accounting periods beginning on or after 1st January 2019), (The SORP).

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the financial statements to be reached.

Neil Heyes

Neil Heyes (Sep 22, 2023 14:47 GMT+1)

Neil Heyes FCA - Independent Examiner (Senior and Statutory Auditor) for and on behalf of: Rayner Essex LLP Chartered Accountants and Statutory Auditors Faulkner House Victoria Street St Albans AL1 3SE

19 September 2023

13

International Gaucher Alliance Limited

Statement of Financial Activities Including Income and Expenditure Accounts for the year ended 31 December 2022

Notes
Unrestricted
Funds
2022
£
Income
Donations and legacies
118,718
Charitable activities
9,864
Total income
128,582
Expenditure
Charitable activities
157,723
Total expenditure
157,723
2
(29,141)
Other recognised gains/ (losses)
Total funds at 1 January
222,899
Transfers in /(out)
(15,471)
Total funds at 31 December
11
178,287
Net income/(expenditure) for the year and
Movement in total funds for the year		 Restricted
Funds
2022
£
122,825
-
122,825
135,510
135,510
(12,685)
5,783
15,471
8,569		 Total Funds
2022
£
241,543
9,864
251,407
293,233
293,233
(41,826)
228,682
-
186,856		 Total Funds
2021
£
277,711
15,856
293,567
267,491
267,491
26,076
202,606
-
228,682

The statement of financial activities includes all gains and losses in the year. All incoming resources and resources expended derive from continuing operations.

14

International Gaucher Alliance Limited

Statement of Financial Activities Including Income and Expenditure Accounts for the year ended 31 December 2021

Notes
Unrestricted
Funds
2021
£
Income
Donations and legacies
116,050
Charitable activities
15,856
Total income
131,906
Expenditure
Charitable activities
101,900
Total expenditure
101,900
2
30,006
Total funds at 1 January
202,606
Transfers in /(out)
(9,713)
Total funds at 31 December
222,899
Net income/(expenditure) for the year and
Movement in total funds for the year		 Restricted
Funds
2021
£
161,661
-
161,661
165,591
165,591
(3,930)
-
9,713
5,783		 Total Funds
2021
£
277,711
15,856
293,567
267,491
267,491
26,076
202,606
-
228,682		 Total Funds
2020
£
225,964
6,745
232,709
190,820
190,820
41,889
160,717
-
202,606

The statement of financial activities includes all gains and losses in the year. All incoming resources and resources expended derive from continuing operations.

15

International Gaucher Alliance Limited Registered number: 06653373 Balance Sheet as at 31 December 2022

Notes
Fixed assets
Intangible assets
8
Tangible assets
9
Investments
10
Current assets
Debtors
12
Cash at bank and in hand
Creditors: amounts falling due
within one year
13
Net current assets
Total assets less current
liabilities
Net assets
Total funds of the charity
Restricted Funds
Unrestricted Funds
Total charity funds		 2022
£
17,451
1,841
100
19,392
59,533
150,731
210,264
(42,800)
167,464
186,856
186,856
14
8,569
14
178,287
186,856		 2021
£
18,408
3,789
100
22,297
22,864
220,505
243,369
(36,984)
206,385
228,682
228,682
5,783
222,899
228,682

The directors are satisfied that the company is entitled to exemption from the requirement to obtain an audit under section 477 of the Companies Act 2006.

The members have not required the company to obtain an audit in accordance with section 476 of the Act.

The directors acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of accounts.

The accounts have been prepared and delivered in accordance with the special provisions applicable to companies subject to the small companies regime. The profit and loss account has not been delivered to the Registrar of Companies.

Biljana Jovanovic (Sep 21, 2023 10:07 GMT+2)

Biljana Jovanovic Trustee

Approved by the board on 19 September 2023

16

International Gaucher Alliance Limited Notes to the Accounts for the year ended 31 December 2022

1 Accounting policies

Basis of preparation

The accounts have been prepared under the historical cost convention and in accordance with the Statement of Recommended Practice (SORP), Accounting and Reporting by Charities and FRS 102, The Financial Reporting Standard applicable in the UK and Republic of Ireland (as applied to small entities by section 1A of the standard) and the Companies Act 2006. As such the charity has taken advantage of the exemption available not to present a Cash Flow statement.

International Gaucher Alliance Limited meets the definition of a public benefit entity under FRS 102.

The financial statements have been prepared to give a 'true and fair' view and have departed from the Charities (Accounts and Reports) Regulations 2008 only to the extent required to provide a 'true and fair view'. This departure has involved following SORP 2015 rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 (SORP 2005) which has since been withdrawn.

Going concern

The charitable activities are entirely dependent on continuing grant aid and voluntary donations. As a consequence, the going concern basis is dependent on the future flow of these uncertain funding streams. Accordingly, the Trustees have obtained forecasts and, after reviewing the financial forecasts for future periods to 31 December 2023, the Trustees are satisfied that, at the time of approving the financial statements, it is appropriate to adopt the going concern basis in preparing the financial statements. Other than these matters, the Trustees are not aware of any material uncertainites about the charity's ability to continue as a going concern.

Fund Accounting

Funds held by the charity are either:

Unrestricted funds are available for the use at the discretion of the trustees in furtherance of the general objectives of the charity.

Designated funds are unrestricted funds earmarked by the trustees for a particular purpose.

Restricted funds are subject to restrictions on their expenditure imposed by the donor or through the terms of appeal.

Income

Income received from subscriptions, donations, Gift Aid Tax and activities is measured at the fair value of the consideration received or receivable. Income is recognised when the charity has entitlement to the funds, any performance conditions attached the item of income have been met, it is probable that the income will be received and the amount can be reliably measured. Accruals are made for monies received on fund generating activities that were held during the financial year but received after the financial year end up to the date these financial statements were approved by the trustee/directors. Income received in advance of the provision of services is deferred until the criteria for income recognition are met.

Donated services

Donated services and facilities are included in the accounts on the basis of the value of the gift to the charity.

All donated services and facilities are recognised as donation income when received, (provided the value of the gift can be measured reliably) and recognised as an expense with an equivalent value.

Expenditure

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable tht a settlement will be required and the amount of the obligation can be measured reliably. Resources expended are included in the Statements of Financial Activities on an accrual basis, inclusive of any VAT which cannot be recovered. Where applicable they have been charged directly to the funds and activities to which they relate.

Fixed Asset Investments

Interests in subsidiaries, associates and jointly controlled entities are initially measured at cost and subsequently measured at cost less any accumulated impairment losses. The investments are assessed for impairment at each reporting date and any impairment losses or reversals of impairment losses are recognised immediately in profit or loss.

Intangible fixed assets

Website development costs are being written off in equal annual instalments over its estimated economic life of 5 years.

Tangible fixed assets

Tangible fixed assets are measured at cost less accumulative depreciation and any accumulative impairment losses. Depreciation is provided on all tangible fixed assets, other than freehold land, at rates calculated to write off the cost, less estimated residual value, of each asset evenly over its expected useful life, as follows:

17

International Gaucher Alliance Limited Notes to the Accounts for the year ended 31 December 2022

Plant and machinery

over 4 years

Debtors

Short term debtors are measured at transaction price (which is usually the invoice price), less any impairment losses for bad and doubtful debts. Loans and other financial assets are initially recognised at transaction price including any transaction costs and subsequently measured at amortised cost determined using the effective interest method, less any impairment losses for bad and doubtful debts.

Creditors

Short term creditors are measured at transaction price (which is usually the invoice price). Loans and other financial liabilities are initially recognised at transaction price net of any transaction costs and subsequently measured at amortised cost determined using the effective interest method.

Pensions

Contributions to defined contribution plans are expensed in the period to which they relate.

2
Net income/(expenditure) for the year
This is stated after charging:
Depreciation and amortisation of owned fixed assets
Trustees' and volunteers' remuneration
Independent Examiner's remuneration
Contributions to pension fund for employees
3
Donated goods, services and facilities
Included in donations and legacies:
Donated goods and services		 2022
£
1,949
48,045
3,000
1,680
2022
Unrestricted
funds
£
48,045
48,045		 2021
£
4,846
34,325
3,000
1,617
2021
Unrestricted
funds
£
34,325
34,325

Directors and volunteers have made donations of their services to the company during the year to the value of £48,045 (2021: £34,235). Administration expenses include directors' and volunteers' fees for services donated to the company of £48,045 (2021: £34,235) and donations and legacies include donations by the directors and volunteers of £48,045 (2021: £34,325) in respect of their services to the company.

4
Staff costs
Wages and salaries excluding trustees and key management personnel
Social security costs
Other pension costs
Salaries and benefits paid to key management personnel
Directors' and volunteers' fees for services donated to the charity
The cost to the charity of senior management personnel remuneration included the following:
Gross wages and Employer's National Insurance contributions
Contributions for the provision of money purchase pension
Numbers of such staff to whom benefits are accruing :
Under money purchase pension schemes
5
Employees
Average number of full time staff
Average number of part time staff
Average total number of staff		 2022
£
42,144
10,964
1,680
64,265
48,045
167,098
2022
£
72,603
1,321
2022
Number
1
2022
Number
1
2
3		 2021
£
39,081
8,889
1,617
60,703
34,325
144,615
2021
£
68,255
1,319
2021
Number
1
2021
Number
1
2
3

18

International Gaucher Alliance Limited Notes to the Accounts for the year ended 31 December 2022

5 Employees (continued)

The number of employees whose emoluments including taxable benefits but excluding employer's pension contributions fall into the following bands were :

2022
Number
£60,001 to £70,000
1
6
Remuneration and payments to volunteers and to Trustees and persons connected with them
2022
£
Remuneration payable to trustees or connected persons
Directors' and volunteers' fees for services donated to the charity
48,045		 2021
Number
1
2021
£
34,325

Directors and volunteers have made donations of their services to the company during the year to the value of £48,045 (2021: £34,235). Administration expenses include directors' and volunteers' fees for services donated to the company of £48,045 (2021: £34,235) and donations and legacies include donations by the directors and volunteers of £48,045 (2021: £34,325) in respect of their services to the company.

7
Deferred income - Restricted funds
Pfizer work programmes 2021 and 2022-23
International Working Group on Gaucher Disease
Takeda Transitions grant		 2022
Received
deferred in
year
£
26,000
-
5,000
31,000		 2022
Deferred
at year end
£
20,800
3,048
5,000
28,848		 2021
Received
deferred in
year
£
2,136
9,143
11,279		 2021
Deferred
at year end
£
2,136
9,143
11,279

Deferred income is included in creditors and comprises funding specified by the funders as relating to specific periods and represent those parts of restricted funds which relate to periods subsequent to the accounting year end and are treated as grants in advance.

8 Intangible fixed assets

Intangible fixed assets
Website development costs:
Cost
At 1 January 2022
Additions
At 31 December 2022
Amortisation
At 1 January 2022
Provided during the year
At 31 December 2022
Net book value
At 31 December 2022
At 31 December 2021		 £
21,240
3,660
24,900
2,832
4,617
7,449
17,451
18,408

Website development costs are being written off in equal annual instalments over its estimated economic life of 5 years.

19

International Gaucher Alliance Limited Notes to the Accounts for the year ended 31 December 2022

9 Tangible fixed assets

Cost
At 1 January 2022
At 31 December 2022
Depreciation
At 1 January 2022
Charge for the year
At 31 December 2022
Net book value
At 31 December 2022
At 31 December 2021		 Plant and
machinery
etc
£
9,416
9,416
5,627
1,948
7,575
1,841
3,789		 Total
£
9,416
9,416
5,627
1,948
7,575
1,841
3,789

10 Investments

Investments in
subsidiary
undertakings
£
Cost
At 1 January 2022
100
At 31 December 2022
100
Historical cost
At 1 January 2022
100
At 31 December 2022
100		 Total
£
100
100

11 Subsidiary companies

The name of the subsidiary undertaking is International Gardian Limited, registered in England & Wales with company number 12658731.

The aggregate amount of the holding company's investment in its subsidiary is £100, which represents 100% of the issued ordinary share capital of the subsidiary. The subsidiary is controlled by the holding company by virtue of the power to appoint directors to the board of the subsidiary.

The subsidiary's activities relate to those of the holding company in that the subsidiary is a trading enterprise engaging in trades similar to the charitable activities of the holding company.

A summary of the unaudited financial statements of the subsidiary is :
Assets and Funds
Aggregate amounts of assets /(liabilities)
Aggregate amount of funds
Profit and Loss
Turnover
Expenses
Net profit /(loss) for the year after tax		 2022
£
3,858
3,858
152,657
(141,811)
10,846		 2021
£
(6,988)
(6,988)
509,511
(513,597)
(4,086)

The net profit of the subsidiary is stated after including intergroup company expenditure of £15,962 (2021 - £20,862).

12 Debtors
Other debtors
Amounts owed by group undertakings and undertakings in which the company has a
participating interest		 2022
£
17,964
41,569
59,533		 2021
£
22,864
-
22,864

20

International Gaucher Alliance Limited Notes to the Accounts for the year ended 31 December 2022

13 Creditors: amounts falling due within one year
Deferred Income - Restricted funds
Taxation and social security costs
Other creditors
14 Movement in Funds
As at 1
January
2022
£
Restricted funds
Gene Therapy
60
Sanofi work programme
-
Pfizer work programme 2021
5,723
Pfizer work programme 2022-23
IWGDD
-
Avrobio
-
Freeline
-
Total restricted funds
5,783
General fund
222,899
Total unrestricted funds
222,899
Total restricted and unrestricted funds
228,682
Movement in Funds
As at 1
January
2021
£
Restricted funds
Eurordis Funding
-
Gene Therapy
-
Sanofi work programme
-
Access to Medicines Africa
-
Pfizer work programme
-
IWGDD
-
Total restricted funds
-
General fund
202,606
Total unrestricted funds
202,606
Total restricted and unrestricted funds
202,606		 Income
£
-
71,447
-
7,337
6,041
20,000
18,000
122,825
128,582
128,582
251,407
Income
£
1,619
5,000
56,537
71,955
23,502
3,048
161,661
131,906
131,906
293,567		 Expenditure
£
-
(82,425)
(5,763)
(2,102)
(7,220)
(20,000)
(18,000)
(135,510)
(157,723)
(157,723)
(293,233)
Expenditure
£
-
(4,940)
(67,230)
(71,979)
(17,779)
(3,663)
(165,591)
(101,900)
(101,900)
(267,491)		 2022
£
28,848
2,914
11,038
42,800
Transfers
in/(out)
£
-
14,252
40
-
1,179
-
-
15,471
(15,471)
(15,471)
-
Transfers
in/(out)
£
(1,619)
-
10,693
24
-
615
9,713
(9,713)
(9,713)
-		 2021
£
11,279
2,519
23,186
36,984
As at 31
December
2022
£
60
3,274
-
5,235
-
-
-
8,569
178,287
178,287
186,856
As at 31
December
2021
£
-
60
-
-
5,723
-
5,783
-
222,899
222,899
228,682

During the year ended 31 December 2022 transfers were made from unrestricted funds to cover deficits on the Sanofi work programme, Pfizer work programme 2021 and IWGDD restricted funds.

During the year ended 31 December 2021 transfers were made from unrestricted funds to cover deficits on the Sanofi work programme and IWGDD restricted funds and to re-allocate expenditure incurred in the year ended 31 December 2020 relating to Eurordis restricted funding received in the year. At 31 December 2022 the net assets of £186,856 were analysed between unrestricted funds of £178,287, and restricted funds of £8,569.

The purposes for which the funds are held by the charity are:

Unrestricted funds:

General fund

These funds are held for the meeting the objectives of the charity, and to provide reserves for future activities, and, subject to charity legislation, are free from all restrictions on their use.

21

International Gaucher Alliance Limited Notes to the Accounts for the year ended 31 December 2022

14 Movement in Funds (continued) Restricted funds:

Gene Therapy Funds received from Freeline for funding Gene Therapy work. Sanofi work programme Funds held for funds received from Sanofi for funding 2021 work programme. Access to Medicines Africa Funds received for Takeda for Access to Medicines Africa project. Pfizer work programme 2021 Funds held for funds received from Pfizer for funding 2021 work programme. Pfizer work programme 2022-23 Funds held for funds received from Pfizer for funding 2022-23 work programme.

Funds held for funds received from International Working Group on Gaucher Disease to support promotion and recruitment of patients and caregivers to the nGD registry.

IWGDD Funds held for funds received from International Working Group on Gaucher Disease to support promotion and recruitment of patients and caregivers to the nGD registry. Avrobio Funds held for funds received from Avrobio for patient education / support. Funds held for funds received from Freeline for specified projects relating to Freeline improving patient access.

15 Related party transactions

Jeremy Manuel, the Honorary President of the Company and Tanya Collin- Histed, the Chief Executive Officer of the Company are both directors of The Gauchers Association Limited. During the year charges were received from the Gauchers Association Limited as follows:

Limited as follows:
2022 2021
£ £
Administration fees 1,138 1,104
During the year the company has recharged costs to the Gauchers Association Limited and to its subsidiary International
Gardian Limited as follows:
The Gauchers Association Limited Consultancy fees 4,800 10,400
The Gauchers Association Limited Administration fees 552 1,343
International Gardian Limited Administration fees 15,962 20,862

At 31 December 2022 included in other creditors is £601 (2021: £ nil) owed to The Gauchers Association, and included in amounts receivable from Group undertakings is £17,964 due from International Gardian Limited (2021: £22,864)

During the year staff costs included £2,486 (2021:£3,308) relating to 50% of time spent on work done for its subsidiary International Gardian Limited ("IGL"). Administration fees included £4,733 relating to contractor costs incurred for IGL (2021: £355). These amounts have not been recharged to IGL as the charity agreed to fund 50% of staff and contractor time spent on IGL work for a period of 2 years from July 2021.

16 Controlling party

The company is limited by guarantee and is under the control of its Trustees as a body.

17 Other information

International Gaucher Alliance Limited is a private company limited by guarantee and is incorporated in England. It has no share capital. The liability of each member in the event of winding up is limited to £10.

If upon winding up or dissolution of the charity there remain any assets, after the satisfaction of all debts and liabilities, the assets represented by the accumulated fund shall be transferred to some other charitable body or bodies having similar objects to the charity.

As a charity, tax exemption applies to income arising and expended on its charitable activities. An Independent Examination has been carried out on the accounts. There were no matters of concern arising as a result of the Examination.

Its registered office is: 86-90 Paul Street London EC2A 4NE

22

International Gaucher Alliance Limited

Detailed Income and Expenditure for the year ended 31 December 2022

This schedule does not form part of the statutory accounts

Total funds
2022
£
Donations
Revenue grants and donations from non public bodies
193,498
Donated goods and services
48,045
Charitable activities - consultancy fees receivable
9,864
251,407
Expenditure on charitable activities- Grant funding of activities
Grants made/charitable payments
-
-
Expenditure on charitable activities - Direct spending
Employee costs:
Wages and salaries
106,409
Pensions
1,680
Employer's NI
10,964
Temporary staff and recruitment
-
Travel and subsistence
47,750
Other direct costs:
Research
7,198
Conferences and Seminars
1,788
175,789
Expenditure on charitable activities - Support costs
Employee costs:
Employee costs:
Staff training and welfare
357
Directors' and volunteers' fees
48,045
Entertaining
305
48,707
Premises costs:
Rent
3,457
3,457
General administrative expenses:
Telephone and internet
887
Postage
47
Stationery and printing
1,215
Subscriptions
3,460
Bank charges
597
Insurance
1,300
Equipment expensed
298
Software
6,551
Repairs and maintenance
559
Depreciation
1,949
Amortisation of intangible fixed assets
4,617
Foreign exchange gains and losses
(5,872)
15,608		 Total funds
2021
£
243,386
34,325
15,856
293,567
71,979
71,979
99,784
1,617
8,889
536
988
-
-
111,814
224
34,325
79
34,628
4,560
4,560
1,074
82
(1,531)
3,492
452
2,073
-
3,970
171
2,014
2,832
6,024
20,653

23

International Gaucher Alliance Limited

Detailed Income and Expenditure for the year ended 31 December 2022

This schedule does not form part of the statutory accounts

Legal and professional costs:
Accountancy fees (including Examiner's fee)
Consultancy fees
Administration recharge (contractor)
Other legal and professional
Total		 Total funds
2022
£
5,838
1,440
19,596
22,798
49,672
293,233
(41,826)		 Total funds
2021
£
4,965
3,259
1,799
13,834
23,857
267,491
26,076

24