REGISTERED CHARITY NUMBER N Ireland: 105731 Irelgnd: 20204769 REPORT OF THE TRUSTEES AND RECEIVtS.4f*T PAYMENfs ACCOLNrs FOR THE YEAR ELNDED JI DECEMBER 2023 FOR VASCIIITIS [RELND AWARENESS
VASCULITIS IREkniND AWARENESS CONTENTS OF THE FINAINCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023 Report of the Trustees Independent Examinefs Rep)rt io Receipts and Payment Account Ststement of Assets and Liabilities 12 Notes to the Financial Stafrments 13 Detailed Receipts and Payments analysis 14
VASCULITIS IRELAND AWARENESS REPORT OF THE TRUSTEES FOR THE YEAR EIYDED 31 DECEMBER 2023 The tnteeS present theftr report with the financial statements of the elwity for the year ended 31 December 2023. OWECTIVES AND AcfiviTIES Objectives 2nd aims Purpose of charity The purposes of the ¢harity are.. To provide suppor¢ To raise awareness and To improve services and care for those affectsd by Vasculitis, and suptM)rt vll11t1S research. To liaise with medical pr()fessionals. reScaherS and pharmaceutical companies in advancing a better understanding of vasculitis and improved outcomes for patients. In furtherance of the atK>ve objectives the charity may: Provide infom]ation: advice and guidance to people affected by any of the V&sculitis diseases. Hold "Coffee and chat" meetings Oroanise meetings (open to anyone with a chronic illness) around topical issues such as Welfare Reform etc. Oraanise and run ndraiSIn(l events Hold annual conferences Provide e-mail and telephone suptK)rt to new and existing members Assist members with fmancial SUPkX)rt for attending conferences Signifieant aetivities Vasculitis Ireland Awareness provTdes a range of SUPEM)rt services to individuals livino with Vasculitis DISeS. These services include information, befriending, group meetings. e-mail and telephone SUPFM)rL V&sculitis Ireland Awarene&8 also supports research into the causes and treatment of Vasculitis diseases. To support these services flnancially, vul[tIS Ireland Awareness receives donations frotn the general public in both Northern Ireland and the Republic of Ireland. Vasculitis Ireland Awareness also carries out a range of fundraising activities including qui72e4 coffee mornings and a range of one-off events throughout each year. Beneficiaries V&sculitis Ireland Awareness is an island of Ireland supp)rt group set up in 2010 and services are available to anyone affected by any of the Vasculitis dIseS in Ireland. It is recognised as a charity in IM)th Northern Ireland and the Republic of Ireland. 0ECTIVEs AND AcfiviTIES Public benefit The trustees are confident that the charitable aims of V3sculitis Ireland Awareness satisfy the principles of public benefit as defined in the Charities Act. They have referred to the guidance Con"ed An the Charity Commission's general guidance on public benefit when reviewing the aims and objectives and in planning its future activities. How the charity activities deliver public benefrt The charitable activities focus on suptK)rting the needs of F*ople with any of the V&sculitis diseases and are undertaken to further the charitsble purposes for the public benefiL The principal aim of the charity is that of providing inforniation. advice and guidance to people affected by any of the Vasculitis diseases, providintr support and rnising awareness of these diseases, and improvincr services and care for those affected by Vwulitis diseases. E-mail and telephone supw)rt is also facilitated. The trustees believe equal access to its services is vital to its suece&s. and that successful outcomes must be shared by ail communities that use its services.
VASCULITIS IRELAND AWARKNESS REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023 ACHIEVEMENT AND PERFORMANCE Charitable Aetivities Vasculitis Ireland Awareness continues to focus on producing outcomes which bring real and tangible benefits to people living with Vasculitis diseases. At all times. vU11t1S Ireland Awareness maintains its constant commitment to developing the range and quality of supp)n offered to individuals living with vlItiS diseases throuJ¢T Out Ireland. The drive and deterniination of V&sculAtis Ireland Awaren$ to maintain Its level of service delivery and look at the development of new services can only happen with the continuing support of the Vasculitis Ireland Awareness Committee and its members. The charity delivers its services directly to people to provide information. friendship and support as well as to reduee the Isolation felt by many of those living with Vasculitis diseases. Vasculitis Ireland Awareness continues to contact consultants to inforn them of theRr existence and to provide them with infomiation on upcoming events. in the hope that they will share these with the attendees of their clinics. This is an effective way of raising awarene&s of our services and reaching out to those in need of assistance, as well &$ receiving referrals from practitioners. The continuing presence of COVtD in society meant that most of our business had to continue being held online. Our ommunity remained vulnerable with uncertainties alK)Ut how COVID 19 would affect us and the effectiveness of the new vaccinations. This brought further anxiety and worry. and it was important to ensure we were available to provide curr¢nt advice kmd inforniation to help alleviate these. With this in mind, we established several main priorities to help us meet this requirement. Our priorities this year w&$ to have online meetings on current issues. available servic&8, self-management and optM)rtunity to just talk- for au living with vasculitis including their carers. improve our online presence considering our reliance on it throughout the pandemic. employing a website designer, improve proce&s to join our mailing lis¢ and operating social media The work on our website became increasingly urgent as our old one has become very difficult to update. Explore resources needed and needs of our patient community in setting up a 'Buddy Scheme, for Peer Supporl whereby members Can support newly diagnosed people. look into possibility of recruiting more volunteer5 to help with managing the charity support group. Developing networks with researchers, clinicians and Ortranisations to help with improvin(F vaseulitis care and management in Ireland. We continue our close working relationship with other patient groups, mainly but not only, Vasculitis UK. Vasculitis International, Northem Ireland Rare Dise partnership, Rare Dise&se Ireland, and Irish Platfomi for Patient Organisations, Science alld Endusty. We have also been fortunate to be invited to participate in European wide projects so our local voice can be included. We eontinue to link with local organisations to help our tnembers access resources to help with the manaoement of their conditions. i.e. Arthritis Irelan( Northern freland Rare Disease Partnership, Volunteer Ireland. We have also been actively involved within RITA Ireland and ERN RITA in working with our EU colleagues in the world of rare disease and Vll11tiS. In April, we began discussions with Urban Brand Creative to help us design a new and more accessible website. Throughout the year, we spent a lot of time collecting the infonnation our members needed and requested and relaying this to UBC. Roles Julie remained as Chair and will hand over to Cecil at the AGM in January. Cecil has continued secTetary, and we are actively seeking a replacement. Tadhg Treacy (Rol) has taken over the role of Governance OtTicer and has overseen updating all our Policies and Procedures in accordance with both the Charity Commission of NI and the Charities Regulator in ROI. Jennifer Kelly has accepted the role of Volunteer Co Ordinator, Vivienne Beattie continues to be our Mediator, Tim Whymark is our Rol tre&8urer.
VASCULITIS IRELAND AWARENESS REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023 We also were fortunate to retain volunteers to help us with specific roles. Seamus Beausang who has been instnmientai in creating new contact wds. and brochures and getting these to all clinics so newly dIaoSed patients know of us Mar(Faret Dunne, Immunolooist and TCD lecturer who has helped us improve our Patient and Public Involvement presence in research projects. Maria Christofideau - Early-stage researcher within several research projects we are involved with, who h&$ a legal background and helps us with GDPEI privacy and data protection issues. Providing Support We held all our meetings online due to the ongoing COVID situation and reduced manFK)wer and fmances to set up face to face meetings. We have had a steady flow of new contacts throughout the year via our Facebook page and helpline number. This year we spent time updating a forni to enrol in our membership, oudininu the different levels of participation one can opt into. We also set up a Mail¢himp system to send out our emails on a rettular basis so that people can be fully infornled of any Vaseulitis news. We continue to provide supw)rt by email and telephone - providing rSUranCe and guidance when needed. We liaise closely with the consultsnts in the vcul1t1S Ireland Network (VINE) to ensure the correct procedures are adoptd when seeking an initial referral. The awareness campaign led by Seamus. helped us reach more rural healthcare clinics and resulted in queries from healthcare professionals re our work and how we can work to. ther. We have also worked with some clinicians to ensure that brochures and our support 0Up contact cards are available at clinics. We continued work on the -Buddy Scheme which changed names several times to reflect the service we could provide. We spent a long time exploring what was actually needed by our members and the resources available to us. This time is important to ensure we manage expectations and provide a service which is fit for purwse. Summary of sUprt Group meetings in 2023 January 9th 19.00- 20.15 (knline Talk from ILNtD about hearing loss and how to manaoe it. Heartng loss is very common amongst our members and this talk and discussion delivered by ELNID was very useful, to explain the resources they have available to deal with this issue. A recording of the talk is on our You Tube members channel at htt s:// outu.be/Lz sOBmwF8?si=iLbo4 8FoXIUSW9f February 6th 19.oik 20.15 Online Talk from Prof David Jayne from Addenbr(K>ke4 Vasculitis clinic Catnbridge alK)ut all things Vasculitis. This was a well-attended meetino to hear from one of the top v&sculAtis consultsnts in the world. A rec4)rding of ts talk is on our YouTube members channel at outu.belJ'HBluPLW Y?si-tUEe17EReBxB8U'U 6th March 19.IM)-20.15 Online Coffee and Chat - infomial discussion betwttn membeTS, catchino up and sharing experiences in manaoing Vasculitis. 3rd April 19.00-20.15 Online. Dr Sinead Stoneman (Cork University Hospital) presenting a new renal app she is prop)sing to develop and lookino for feedback from the patient community on wntent and feasibility. 9th May, 19.00-20.15 Online Results of AVERT study - effects of UVIVitamin D on Vu11tiS by Dr Jennifer Scotl Tallaght Hospital 5th June 19.01>20.15 Online Coffee and Chat From 25th September we rdn a series of weekly presentations from the EULAR symposium with OppOrnIty for discussion aftenvards 25th September 19.00-20.15
VASCULITIS IRELAND AWARENESS REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023 Online Rare Muscular Disorders(RMDs) and Co morbidities RMDS. Cancer and Mentsl Health- how are they connected? RMDS and possible comorbidities- a patient perspective RMDS and co morbidities, can psycholo help. 2nd October 19.00-20. E5 Online RMDS and Comorbidities continued. Creativity and co production to support people living with chronic pain and their mental health. Preliminary findings of Qualitative Exploration of the effectiveness of an online Fatigue and Activity Management education in work (FAME W) intervention for people with inflammatory arthritis. 9th October 19.00- 20.15 Online Living and plannino life while CexISt1ng with an RMD To offer solutions to challenges faced by patients in planning their lives. To inspire patients to live life to its fullest l. Love, live, work and PsA- my story 2. Understanding the impact of RMD on work life 3. Mindfulness- Balancing life with a chronic illness 16th October, 19.00-20.15 Online Living omd planning life while ¢o-existing with an RMD with emphasis on havin(F a family l. Same-Sam¢ or different- RNtDs and planning a family 2. What are the unmet needs of pregnant patients diagnosed with inflammatory rheumatic dise&ses receiving care in a highly specialÈsed reproductive rheumatology centre? The results of the CAPRI study. 23rd Othiber No meeting 30th October, 19.00-20.15 Online Large Vessel Vasculitis An updat on the use of various diagnostic modalities and treatment option& including biological agents. in large vessel vasculitis {Takayasu. aortitis, GCA) Talk on Large Vessel Vasculitis 6th November 19.01>20.15 Online ANCA Associated Vasculitis Review and discuss the current advances in ANCA associated vasculitis. Present the new EULARIACR classification criteria with disclslon of new insiJu ts into vasculitis subtypes. Discuss EULAR and other management recommendations for ANCA-associated vasculitis. Discuss new and emerging therapies for ANCA vasculitis such as cotnplement inhibition. l. Recommendations for management of ANCA associated vwulitis 2. Insights from new 2022 EULAR]ACR classification criteria 13th November 19.00-20.15 Online ANCA Associated Vasculitis (ctd) l. Newer treatments for ANCA Vasculitis - David Jayne 2. Benralizumab for EGPA.. results from a European rnulticentre study on 121 patients 3. The burden of multi morbidity in ANCA associated V&8culitis: A cohort study 20th November 19.00-20.15 Dats Matters To highlight the role of patient organisations in dats Collection for registries and records. To learn what is important for patients and organisations in relation to data collection and clinical trials. l. Facilitate data sharing. re-use and retUTn of clinical trial data to study participants 2. Patients, involvement in registries and biobanks: The Rare Kldney Disease Registy and Biobank (Julie) 27th November 19.00-20.15 Online. Exercise beyond Drugs - Importance of being physicatly active To explain the evidence for physical activkty as an infrgral part of SLdard ce for people with RMDS.
VASCULITIS IRELAND AWARENESS REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023 To implement the use of exercise in the care of people with RMDS. and explain benefits of exercise in prevention and rehabilitatio with examples such strength, endurdnce, and joint mobility improvements. l. What can we do to suptK>rt our patients to become more physicalty active? 2. The importance of aerobic capacity for the risk for cardiovascular diseases in patients with inflammatory arthritis 4th December 19.00-20.15 Online. Exercise beyond Drugs - Importance of b¢in¢F physically active {ctd) Strength maintenance and development as a pillar of health. Raise AwareDess We have been involved in several education iniiiatives durin¢F the year. giving input and presentations to healthcare professionals, nursing students, medical graduates, rare disease community and researchers, about the experienee of living with vasculitks. January 28th- Winter trish Nephrology Society meeting- Julie w&$ invited to speak ai¥)ut Researcb from the Patient's Perspective. Feedback frotn this was relayed back via one of our members who was told by their eonsultsnt that he now took patient perspective into consideration with his consultations. 6th-9th February - Invited participation in EURORDIS Rare Disease week. advocating for Europe wide Rare Disease Action Plan, more reColtiOn of Mentsl Health i&8ues in Rare Disease, and for a patient driven evolution of the Otyhan Medicinal Product Reuulation - addressing unmet needs. This involved meetings with three Irish MEPS to discuss these issues with regard to Ireland. 28th February Intemationai Rare Disease Day in Stormont where we had an infomiation stand and had the launch of I in 17 Rare Voices series developed by NIRDP featurints Julie. This video is also oll our YouTube members channel at outu.be/GSsVSIY6nLM?si-YsvxGtBMHUEwoYT3 4th May All Ireland Interdisciplinary Rare Dise&se Network webinar. Description: All Ireland Rare Disease Interdisciplinary Research Network { RAIN) is a collatK)rative effort between rnre disease interdisciplinary researchers and community groups across Ireland. This research w&8 fijnded by the Shared Island strand of the Irish Research Council's New Foundations programme. This network focus is: To bring together interdisciplinary researchers. practitioners, and policymakers in the Island of Ireland to forn] an interdisciplinary research network to improve awareness of and participation in rare diseases research. To address an area of unmet need of children and young people living with rare diseases and their families with a comprehensive interdisciplinary and intersectornl approach that places patients and their needs at the centre. Building on established research partnerships RAINDROP(ROI) and IL4RDTACINI) while developing new interdisciplinary rare disease research networks to inspire and emp)wer early career researchers &% etnerging leaders. Researchers exploring issues affecting people living with rdre health conditions acmss the lifespan presented their work at the webinar. 19th May, Scrvi¢es for People with Systemic Vasculitis VOICES project. Giving Irish perspective. online webinar discussion with others involved in the 3 1st May-3rd June- Julie w&s an invited speaker at EULAR conference in Milatt, to speak aimjut patient involvement in Registries and Biobanks. 8th June Introduction call with Devrn Densmore. Global Patient Advocacy Argenx - a biofrch focused on potential immunological treathients, who are interested in learning more about what is most imp)rtant to people living with ANCA Vasculitis. 12th June, Introduction call with Syneos to conneet about how we may be able to collaiwjrate to raise awareness of an EGPA clinical study for patients and healthcare professionals. 15th-17th June ERN RITA annual General Meetinu _ raising awareness of complications involved in Patient Journey and how do we address these together.
VASCULITIS IRELAND AWARENESS REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023 27th June 2nd RAN webinar 30th Novernber-2nd December Participation in I-HD annual meetino in Ghent to present about the irnportsnce of transparency in research when working with patient dat& Improve serviees and care of those living with Vasculitis and support Vasculitis Research We are a registered charity in KOI as well as Northern Ireland and operate as an all island of Ireland charity. W¢ b¢lieve that registration as a cross -border charity in Ireland will improve services for patients, as this will give access to jurisdictions an avenue to European and International activities. This continues to be a challenge for us to face as the UK leaves the European Union. Throutsh our work with RDI, tPPOSl and NtRDP. we were able to address the issues of access to treatments and vaccines during the pandemic. We ensured the Vasculitis voice was included in any considerations at national level through working with these organisations. As members of EURORDIS we are kept aware of any developments and training opportunities at European level. VIA is now a member of the rare disease GO FAIR patient netwotk https://www.go-fair.orgl. which involves participating in monthly meetings, to look at what is involved in setting up patient registries, and electronic health¢ records and how to make best use of these. We are involved in the ERN RITA European Patient Advocacy Group (ePAG); this h&8 helped to promote our work at a European level and allowed us to benefit from leaming from our European colleagues. Julie sits on the RtPAG b0d and is the Auto Immune Patient Stream lead on the RITA Board. This involves monthly online meetings to discuss how to have the patient voice incorp)rated into acce&s to care in a meaningful way that will improve patients, lives throughout Europe. This y¢ar we complctcd work with the Patient Journey ptDject Concentrating on the Small Vessel Vasculitis Journey. This has been reviewed by European clinicians 5peciaiising in SVV and h&$ been well re¢eived. It is now being advised as an inforniation resource for people livino with SVV. those involved in their care and those planning services by the clinicians in UKIVAS. Cecil has been aetively involved with encompass- the new Digitsl Care Record sysm for very citizen in NI. He is a member if the encompass Engagement Council and is a patient representstive on the Inforniatton Governance Advisory Council and the My Care regional Govemance and Decision Group. Research We have ongoing collaknrations with UKIVAS which has been very useful in helping us get appropriate infonnation on COVID and vaccinations to our members quickly. We have input to the Steering Committee of the Rare Kidney Disease Reaistry (RKD) to oversee and approve actions within this group, ensuring the patient TsPective is considered at every stsge. We continue to attend regular monthly virtual meetings with the FAlliVASC. FAtRV ASC https:Ilfairvasc.eul ts a Europe wide project l(M)king at the interoperability of existing v&sculitis registries and how to eombine these to create a larue dats base which can faciliLe meaningful research. VIA is one of the three patient organisations involved in this. In recogTrition of our worL up to E50,000 has been invested in Vasculitis International over the three-year period of this projecL This is beints used to help supw)rt other vasculitis groups throughout Europe. This is the ast year of the FAIRVASC project and in January 2¢>21 s¢ we were in Krakov looking at what we need for onboarding new registries and had a hackathon in the local university to look at ways of improving the interface and future proofing this. We find this is a successful project and are I)king at ways of continuing this beyond the existing grant. To this end we (the FAIRVASC team which has strong patient involvement) are looking at ways of making this a sustsinable entity which is acceptabl¢ to the public. PA114DISE This is a new project with our European colleagues which has been recently approved. https:/lparadise- project.eul . The concept of this is to use existin(F data to help develop an altrorithm which will predict the probability of flares. By havin¢J a tool like this, Mediclon levels can be reduced or even stopped if there is low probability of relapse. The project launched oificially in April and Julie is one of the research partners. Patient voice is paramount to this project to determine acceptability of using AE in moderating treatment plans. ensuring that the concept is transparent to both researchers and the public so that the concept is transferable beyond V&sculitis. We have an active Patient
VASCULITIS IRELAND AWARENESS REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023 Advisory Group from all over Europe to help direct the pmject and also a team of Irish patients who will help review materials further. There was a plenary meeting in Z4ureb in October 23rd-24th October. We were contacted by severdl companies (Astra Zenica and Syneos on behalf of GSK) wishing our assistance in finding patients with EGPAwilling to participate in surveys and focus groups. This inforniation was circulated to the members for their infonnation. Finance This year the big expenditure was the deposit for developin¢y our new website which was £2,787.09 paid in April. Governance costs We had annual Accountant and Insurance costs &$ per Charity governance requirements. Our Insurance ha8 to cover both jurisdictions. Meetings We rely heavily on the Zoom package to carry out ail our online meetings. This incurs a monthly charge to include cloud storage when necessary. Stationery and Electronics We had no stationery costs this year. Fundraising Unfortunately, &8 we were concentrating on improving our website and listening to our membership on what they wanL we did little hdraiSing this year. We did have a birthday Facebook fimdraiser which raised £193.36 which was paid into our PayPal accounL Setting up a FebOOk Fundraiser is quick and e&8y. The fundraiser could be for your birthday instead of receiving gifts. it could be to take on a challenue or perhaps to remember a loved one on a special anniversary. it C4)uld be donations in lieu of weddino favours or Christmas cards. Faceb(K)k charges no fees on donations made so every penny your friends and family donate through a FaCebk fundraiser comes directly to VIA. Simple instlvction on how t() do this aye on our website at htt s.//W.vasCuIIt1s-1a.0r uet-involved
ASCULITIS IRELAND AWARENE&S REPORT OF THE TRUSTEES FOR THE YEAR ELYDED 31 DECEMBER 2023 ACHIEVEMEINT AND PERFORMANCE Charitgble activities An annual conference is held each year for members and their family members to attend. The annual wnference is very inforniative, giving infomiation on the latest research and developmenL It is presented by ouest speakers. Members can make suggestions for which tr)pics they would like covered and a particular speaker in that field is sought. Members find the annual conference very worthwhile. FIYI ANCIAL REVIEW Finanei21 position The financial position of the charity can be found on pages I l and 12. Principal funding sources The principal funding sources for the charity are currently from donations and fundraising activities. Reserves policy Due to the unpredictability of the Inrne receivable by the Charity it is the policy of Vwulitis Ireland Awareness to maintain a baianee on unrestricted funds to cover ernergency situations that arise from time to time and to also enable the clmrity to continue to deliver its service effectively. The present level of reserves available to the charity is £14,654. FUTURE PLAINS The charity plans continuing the activities outlined above in the forthcoming years subject to satisfying funding arranuements. STRUCTURE, GOVERNANCE AND MANAGEMENT Governing document The charity is controlled by its ooverning document and eonst%tutes an unincotp)rakd charity. Recruitment and appointment of new trnstees A broad mix of skills are represented on the Management Committee and all Trustees are chosen on the b&sis of their willingne&s to serve, ability, governance experience and support of the ethos. mission and philosophy of the organisatton. Risk management The trustees have a duty to identify and review the risks to which the charity is exposed and to ensure appropriate controls are in place to provide re&sonable assurance against fraud and error. REFERENCE ANI D ADMINISTRATIVE DETAILS Reuistered Charity number N Ireland: 105731 Ireland: 20204769
VASCULITIS IRELAN'D AWARENESS REPORT OF THE TREJSTEES FOR THE YE.4R ENDED 31 DECEMBER 2023 REFERENCE AND ADMtYThTIVE DETAILS Principal #ddresses 45 Castle Street Killough Co. Down BT30 7QQ The Gate Lodge Park House Bawtt Street StroLestown Roscommon Republic of Ireland F42 P285 TryJ5tees Julie Power Cecil Amtstron Yivienne Beattie Timothywhytxwk Jennifer Kelly Tadhg TreaLTr Clara Coad' Independellt examiner .B.McGrady & Co Chartered AccOtants Ratbmgre Hous¢ i2 St Patrick5 Avenue DowTtpatri¢k Co. Dow BTJO 6DS Approved by order of the board of trustees on 17.1 D, ' St signd OD its behalf by: Julie Power Trust¢ Cecil knnstrong Trnst fvy