VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
The trustees present their report with the financial statements of the charity for the year ended 31 December 2022.
OBJE￿IVEs AND AcfIvITIES
Objectives and gims
Purpose of charity
The purposes of the charity are:
To provide support.
To raise awareness and
To improve services and care for those affected by Vasculitis, and support Vasculitis research.
To liaise with medical professionals, researchers and pharniaceutical ¢ompanÈes in advancing a better
understanding of vasculitis and improved outcomes for patients.
In furtheranee of the above objectives the cbarity may:
Provide infornialion. advice and guidance to people affected by any of the Vasculitis dise&ses.
Hold "coffee and chat" meetings
Organise meetings (open to anyone with a chronic illness) around topical issues sueh as Welfare Refonn etc.
Organise and rnn fundraising events
Hold annual conference5
Provide e-mail and telephone support to new and existing members
Assist members with financial support for attending conferences
Significant activities
Vasculitis Ireland Awareness provides a range of support services to individuals Iiving with Vasculitis Diseases. These
services include inforn]ation, befriending, group meetings. e-mail and telephone support. Vasculitis Ireland Awareness
also supports research into the causes and trealment of V&sculitis diseases.
To support these services financially, Vasculitis Ireland Awareness receives donations from the general public in both
Northern Ireland and the Republic of Ireland. Vasculitis Ireland Awareness also carries out a range of fundraising
activities including quizzes, coffee momings and a range of one-off events throughout each year.
Beneficiaries
Vasculitis Ireland Awareness is an island of Ireland support group set up in 2010 and services are available to anyone
affected by any of the Vasculitis diseases in Ireland. It is recognised as a charity in both Northem Ireland and the
Republic of Ireland.
OBJECTIVES AND AcfiviTIES
Public benefjl
The trustees are confident tliat the charitable aims of Vasculitis Ireland Awareness satisfy the principles of public
benefit as def￿ed in the Charities Act. They have referred to the guidance contained in 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 benefit
The eharitable activilies focus on supporting the needs of people with any of the Vasculitis diseases and are undertaken
to further the charitable puryoses for the public benefit.
Th¢ principal aim of the charity is that of providing inforn]ation, advice and guidance to people affected by any of the
Vasculitis diseases, providing support and raising awareness of these diseases, and improving services and care for
those affected by Vasculitis diseases. E-mail and telephone support is also facilttated.
The tsustees believe equal access to its services is vital to its success. and that successful outcomes must be shared by
all communities that use its services.

VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
ACHIEVEMENT AND PKRFORMANCE
Charitable activities
Vasculitis Ireland Awareness Continues to focus on producing outwmes which bring real and tangible benefits to
people living with V&sculitis diseases. At all iim¢s, Vasculitis Ireland Awareness maintsins its constant ¢ommiÉment to
developing the range and quality of support offered to individuals living with Vasculitis diseases throughout Ireland.
The drive and detennination of Vasculitis Ireland Awareness to maintain its level of service delivery and look at the
development of new services can only happen with the continuing support of the V&sculitis Ireland Awareness
Committee and its members.
The charity delivers Its services directly to people to provide inforniation, friendship and support as well as to reduce
the isolation felt by many of those living with V&8culitis diseases.
Vasculitis Ireland Awareness eontinues to contsct consultants to inforni them of their existence and to provlde them
with infomlation on upcoming events, in the hope that they will share these with the attendees of their clinics. This is
an effective way of raising awareness of our services and reaching out to those in need of assistanc< as well as
receiving referrals from these practitioners.
The continuing presence of COVID in society meant that most of our business had to Continue being held online. Our
community remained vulnerable with uncertainties about 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
current advice and infomiation to help alleviate these. With this in mind, we estsblished several main priorities to help
us nieet this requirement.
Our priorities this year were to
have online meetings on cu￿ent issues, avaTlable services, self-management and opportunity to just talk- for all
living with vasculitls includitig their carers.
improve our online presence considering our reliance on it throughout the pandemic.
website, mailinu list. creating a closed group forurn and operating so¢iaI media
Deliver a hybrid Intemational Vasculitis Patient event in wnjunction with the Intemational ANCA and Vasculitis
Symposium held in Dublin.
Investigate the feasibility of setting up a 'Buddy Scheme, for Peer SupporL whereby members can support newly
diagnosed people.
look into possibility of recruiting more volunteers to help with managing the charity support group
investigate improving our
We spent a lot of ihe beginning of the year focusing on preparing to host and deliver the International Vasculitis
Patient event in conjunction with The International Vasculitis and ANCA workshop held kn Dublin in April 2022. We
want¢d to avail of the oppoitunity to have world renowD¢d international speakers at our event and share this with our
worldwide patient community.
We continue our close working relation5hÈp with other patient groups, mainly but not only, Vosculktis UK, Vasculitis
International. Northem Ireland Rare Disease partnership, Rare Disease Ireland. and Irish Plarforni for Patient
Organisations, Scienee and Industy. This year has seen us work closely with Vasculitis Foundation and Vasculitis
Stichting in deliverints the Patient event. This has helped us shape fu￿re care and provide input at policy level in all
the jui'isdictions. For example, we were successful in ensuring our community had earlier access to the COVID
Vaccine than the original policies had outlined. We have also been fortunate to be invited to partieipate in European
wide projects so our local voice can be included. We wntinue to Ilnk with local organisations to help our members
access r¢sources to help with the management of their condition& i.e. Arthritis Ireland, Northern Ireland Rare Disease
Partnership, Volunteer Ireland.

VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
Julie remained as Chair to oversee the international event and allow time to train up the next Chair. Cecil has
continued as secretary and we welcomed two new board members Sarah Flynn, (Nt) who brings a background in
psychology and Tadhg Treacy (ROI) who brings a background of governance. Jennifer Kelly has accepted the role of
Volunteer Co Ordinator, Vivienne Beattie continues to be our Mediator, Tim Whymark is now our ROI treasurer.
We also were fortunate to recruit several volunteers to help us with specific roles.
Seamus Beausang who has been instrumentsl in Creating new contact cards, and brochures and getting these to all
Clinics so newly diagnosed patients know of us.
Margaret Dunne, Immunologist and TCD lecturer who has helped us improve our Patient and Public Involvement
presence in research projects.
Maria Christofideau- Early-stag¢ researcher within several research projects we are involved with. who has a legal
background and helps us with GDPR, prÉvacy and dats protection issues.
Providing Support
All meetings were held online due to the OELgoing Covid situation and a steady flow of new contacts were added
throughout the year via the Facebook page and the helpline number.
This year our secretary spent some time designing a form to enrol in our membership, outlining the different levels of
participation one can opt into. This will make this process much usier for all concerned going forward.
Support eontinues to be provided by email and telephone - providing reassurance and guidance when needed. Conlinued
conta¢t with the consultants in the Vasculitis Ireland Network- VINE- ensuirs the correct procedures are adopted
when seeking an initial refer171.
The awareness campaign led by Seamus, helped us reach more rural healthcare clinic5 and resulted in queries from
healthcare professionals re our work and how we can work together.
Summary of meetings in 2022
Due to the organisation involved in the International evenL there were fewer meetings planned this year. Our
membershÈp have access to all recordings in the Vasculitis International website and can vkew them in theii. own time.
This content is quile detaÈled and delivered by world renown physicians. The fact that some of our board members
contracted COVID also meant that there were few meetings from June on.
Januiry 18th 19.00- 20.15 Online
Online Debunked workshop - workshop to help people identify misleading or misrepresented infomiation and provide
some simple techniques to separate fact from ftction. This is very important in the current times with so many versions
of facts circulating.
D¢livei'ed by ADAPT team TCD
March 14th 19.00- 20.15
Online Coffee and Chat
Informal online meeting for members to meet and tslk aErf)ut current issue5, share experiences and support each other.
Programme
April 2nd and 3rd from 12.00 noon on 2nd to Ipm on 3td
International Vascltlitis Patient event- Hybrtd and translation available in 22 languages

VASCULITIS IRELAIND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
Agenda
Saturda
Time
A ril 2" 2022
eaker
13.05-13.20
Introduction
Patient experience- Living with Large Ve￿e1
Vasculitis
Vasculitis Today a Worldwide
Round Table Di5eussion
(Chair: Peter Verhoeven and Joyce Kullman)
13.25-14.00
Prof. David Jayne (UK)
Prof. Richard Kitehing
(Australia)
Prof. Peter Merkel (USA)
Prof. Kevin Cassar
Malta
Dr. Stephen McAdoo
Dr. Emma Lea¢y
Dr. Matthias Buseh
Prof. LO￿aIn¢ Har
14.05-14.35
Covid 19 and Vasculitis, Effectiveness of
vaccinations and boosters
Chair.. Dr. Mi¢h2el Clarkson
Mana
in
Fati
ue in vasculitis
Break- teaj coffee
14.40-14.55
15.00-15.30
Rooin I
15.30- 1?.5(1
15.)5 1().1.5
Cai'diovasiiilar i-isk in .4N'.C.4 ￿asCUli[1S
iiiir5nnienLil rrieoei's in ￿a$Cli11t1j
Di.. F.liiie HouLien
-Alberr N'aK.'ai'ro Galliiiad
Enock. HaN ariniai)
Fai"Ic l) Kaii)bei'oi'-ic
liclial Ziilcirkski
Joi.'ce Ixullintsii & Zdenk1<
Hruskova
16.20- 16.40
Giaiii cell artei-itis
C l)aii': Dr. Eaiiioiiii .l.lollok)
l.'rap ui) Da>. l - Roolii I
l6.47- 17.00
Rooni ?
15.30-15.45
15.50-16.05
16.LO-16.25
Vaiculitis in childreii
N.licrobiomes and vasculitis
lole¢ular Influeiices iii vasculitis
Dr. Louise Oni
Dr. Aiidreas Kroiibichler
Solange Gonzalez Cliiappe
Gisela Pattaroiie
Mai'ia Christofidou
Peter Verhoeven
16.30-16.45
16.45-17.00
19.30-22.00
Data
Vra
Dinner-
rotectioii in vasculitis research
l-Rooin2
tional
Sunda
3, A ril 2022
09.30-09.35
Introduction to Da
09.35-11.00
Palieni Re
orled Outcomes
09.35-09.45
PROS and PROMS in
ers
ective
09.45-09.55
The FAIRVASC
ro
ect
09.55-10.05
Wh PROS in Re
istries
10.05-10.15
How to inte ate PROS into Re
istries
10.20-10.40
Discussion: Most useful PROS.. the patient
ers
eetive
Break- teal coffee
Whal ood care looks like
The VOICES project
Julie Power
Chair: Zdenka￿￿SkOva
Prof. Peter Merkel
Dr. Matthew Rutheiford
Peter Verhoeven
Nathan Lea
All
10.45-11.00
IJ. 10-11.35
11.00-11.20
Dr. Allyson Egan
Dr. Rosema
Holliek
Julie Power
Dr. Shanali Perera
11.20-11.35
11.40-12.45
ERN RITA Patient
ourne
Multidisciplinary Art Workshop: Art. V&sculitis and
the Lived Ex
erienee- Ca
turin
the Invisible
and closin
remarks
12.45-13.00
Julie Power

VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
This was a successful event wlih people joirking from all over the world with up to 80 participants on site and between
40-100 online at any one time.
May 23rd- 19.00- 20.15
Induction training for board members and volunteers- online
9" August 19.00-20.15
Coffee and Chat- Informal discussion between members. catching up, sharing news
27, October 19.00- 20.15
Coffee and Chat- Infornial discussion between members. catching up and sharing news,
28 November 19.00- 20.15 online
Let's Talk About Ava¢opan- discussion on experiences withlwithout Avacopan in preparation for NCPE submission
for Avacopan approval.
We continue to work on Setting up a'Buddy scheme,. Several members have expressed an interest and we are ensuring
all safeguarding is in place before this becomes operdtional. This will become an option to opt in to when we have a
fully operational membership button on our website.
Raise Awareness
As stated earlier, Seamus has been instrumental in increasing our profile in nephrology and rheumatology clinics
throughout IrelandlNorthern Ireland. We have desigrLed a new flyer and contact cards and these have been distribut¢d to
the clinics in the hope that staff and patients become aware of our support group.
We have been involved in several education initiatives during the year, giving input and presentations to healthcare
professÈonals, nursing students. medical ￿dUates, rare disease communlty and researchers, about the experience of
living with vasculitis.
January- Public and Patient Involvement ￿P1) Conversation with UCD Children's nursing students, online talk about
living with rare disease and effects on family.
February
Isi February online meeting with Roscommon Volunteer centre online to raise awareness of VIA and what we do.
28th February International Federation of Nursing Associations UK and Ireland Webinar
'Reshape, Reforni. Reimagine a true partnership with families living with rare disease,
Presentation on effects of living with rare dise&8e on family.
Marc
24th March Pi'esentation to UU Physiotherapy students online
'Impact of professions allied to medicine input in managing v￿ul1tis,
April
Interview with Rare Revolution magazine on the InternatiODal Vasculitis Patient event and registries.
May
25th May NIRDP filming
Living with Vas¢ulitis- diagnostic odyssey through to management
June
8, June Rare Diseases Forum online organised by HCRI
Shared thlk with Prof Suja Somanadhan on PPI and Collaboration

VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
October
26, October online Portugal Erasmus training
Presentation on Privacy concerns when dealinu with patient data.
November
2nd13 Face to face meeting in Madrid Vasculitis International and Vifor Phanna
Design of information materials for those living with AAV
We have had active involvement in several groupslprojects ensurffing the patient voice is tncorporated into projects
January - February- part of organising committee for events on Rar¢ Disease Day being organised by RDI and
IPPOSI Policy Committee- active input to healthcare policies in HSE - ongoing
IPPOSI Education and Training Advisory Group- input to and developing Patient education programme (research
and development, engagement in policy making)- ongoing.
HRB Clinical Research Consortium Ireland (CRCI), Patient and Public Involvement working group, to help educate
the
importance of patient involvement throughout the whole process of policy making, developing services and
research- ongoing
ENP Ireland (European National Platfomi)- this is a conglomerdtion of patient advocates from different
backgrounds who have been involved in either the EUPATI progrdmme or the Irish Patient Education programme,
academics and researchers interested
in Patient and Public involvement. This is a space to share experiences and
leam from each other.
This year we marked Intemational Vasculitis Day on May 15 with picnics in Co. Down and Co. Dublin.

VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
Improve services and eare for those affected by Vxseuliti4 and support Vasculitis Yesearch
The chartty continues to be an all-island of Ireland charity, registered both in ROI as well as Northern Ireland. The belief
s that registration as a eross-border charity in Ireland will Improve services for patients. gÉving them aecess to both
jurisdictions as well as an avenue to European and Int¢mational activities. This continues to be a challenge as the UK
leaves the European Union.
Through work catTied out with RDI, IPPOSI and MRDP. the issue of access to treatments and vac¢ines during the
pandemic ivas able to be addressed. Working with these organisations. ensured the Vasculitis voice was included in any
considerations at national level.
ROI.
Membershkp of EURORDIS ensures the charity is kept aware of any developments and training opportunities at
European level. VtA is now a member of the rare dist￿ GO FAIR patient network htt s:/lwww.ao-fair.or
which
involves participating in monthly meetings, to look at what is involved in setting up p&tient registries, and electronic
healthcare records and how to make best use of these.
The charity is also involved in the ERN RITA European Patient Advocacy Group (ePAG)' this has helped to promote
the charity's work at a European level and also allowed members to benefit from leaming from European colleagues.
Julie sits on the RIPAG board and is the Auto Immune Patient Stream lead on the RITA Board. This involves monthly
onllne meetings to discuss how to ineorporate ihe patients voice into access to care Èn a meaningful way that will
improve patients, lives throughout Europe. This year the Patient Journey project was started, initially concentrating on
the Small Vessel Vasculitis Journey. The plan is to even￿allY have similar for all classifications of vasculitis so that a
uniforni appmach can be considered when devising care pathways and clinical guidelines.
Research
Ongoing collaborations with UKIVAS has continued and this has been very useful in obtaining appropriate information
on COVtD-19 as well as vaccinations. to pass on to the members .
The charity continue5 to have input to the Steering Committee of the Rare Kidney Disease Registry {RKD) to oversee
and approve actions within this group, ensuring the patient ￿rSpeCtiVe is considered at every stage.
Regular fortnightly virtual meetings with the AVERT project research team are attended this piDvides links between
patient group and rese3rchers. This yw the charity worked with Mark Little's team on an ethically-approved research
project looking at experience of va5culitis flares in the last three years. This looks at what can be recognised as a flare
and how to get diagnosed. This information will help deterniine if the time to diagnosis or starting treatment can begin
sooner.
Another &spect of the AVERT project is looking at how to improve the quality of infomiation being gathered by the
Patientmpower app. This involved work between tlie researchers, the study nurse, the technicians and patients and will
lead to more reliable accessible infomiation for the study. The appointment of a new research nurse has created a link
between the participants and the project and a monthly update for oui- members became available for the first time.
The charity is involved in the newly-e5tablished research project DeCOmPRESS, which looks at COVID-19 and
Vasculitis- the susceptibility to COVID. how immune systems react to both COVID and the vaccinations, and what are
the long-term implications if COVID-19 is contrd¢ted. This involves monthly online meetings.

VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
The HELICAL research project was launched in Trinity College Dublin. in December 2019. This is a European project
and involves 32 early-stage researchers investigating various biological and environmental factors which affect
Vasculitis. Julie and a patient representative from the Netherlands Vasculitis group have been invited to participate in
this project to ensure patient perspective is evident throughout. Work has started in ensuring all research consent
documents are transparent and the information they contain is readily understood by patients. There have also been
discussions about what patient data means to patients and their concerns in using this in research. This involves up to six
meetings a year.
Here are further links to infornlation on the ongoing research projects:
hti .'Ilhelical-itn.eulresearch-
ro
ectsl
litt .'In]eli¢al-itn.eulresearch-
ro ectslesr151
FAIRVASC litt s:Ilfairvasc.eul is a Europe wide project looking at the interoperability of existing vasculitis registries
and liow to combine these to create a large data base which can faeiliiate meaningfijl research. VtA is one of the three
patient organisations involved in this. Julie attended the EJP RD iveek-long course on Rare Disease Registries and
FAlRification of Data in September and this has proved very useful in understanding the work in FAlliV ASC. As part
of this project £50,000 was invested in Vasculitis International over the three-year period of thts project. This involves
several half day meetings a year.
PARADISE This is a new project with our European colleagues which ha5 been recently approved. The concept of thi5
will be to develop a means of personalised medication to rduce the side effects when treating AAV.

VASCULITIS IRELAND AWARENESS
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2022
ACHIEVEMENT AND PERFORMANCE
Charitable activities
An annual conference 15 held each year for members and their family members to attend. The annual conference is very
inforniative. giving information on the latest research and development. It is presented by guest speakers. Members can
make suggestions for which topics they would like covered and 2 particul8r speaker in that field is souglit. Members
fmd the annual conference very worthwhile.
FINANCIAL REVIEW
Financial position
The finan¢i21 position of the charity can be found on paoes 12 and 13.
Principal funding sources
The principal fimding sources for the charity are currently from donations and fundraising activities.
Reserves poliey
Due to the unpredictability of the income receivable by the charity it is the policy of Vasculitis Ireland Awareness to
maintain a balance on unrestricted funds to cover emergency situations that arise from time to time and to also enable
the charity to continue to deliver its service effectively.
The present level of reserves available to the charity is £19,303.
FUTURE PLM'S
The charity plans continulng the activities outlined above in the forthcoming years subject to satisfying funding
arrangements.
STRUCTURE, GOVERNANCE AND MANAGEMENT
Governing document
The charity is controlled by its governing document and consÈitutes an unincorporated Charity.
Recruitment and appointment of new trustees
A broad mix of skills are represented on the Management Committee and all Trustees are chosen on the basis of thelr
willingness to serve, ability, governance experience and support of the eth05, mission and philosophy of the
organisation.
Risk management
The trustees have a duty to identify and review the risks to whi¢h the charity is exposed and to ensure appropriate
controls are in place to provide reasonable assurance Loainst fraud and error.
REFERENCE AND ADMINISTRATIVE DETAILS
Registered Cbarity number
N Ireland.. 105731
Ireland: 20204769

VAScUL￿1s JRELAND AWARENESS
REPORT OF THE TRusfEES
FOR THE YEAR EP4DED 31 DKCEMBEK 2022
REFERENCE AND ADMINISTRATtVE DKfAII
Printipal addresses
45 Castle Str¢eE
Killough
Ci). Dow
Bfjo 7QQ
Th¢ Gate LK>dge
Park House
Bawn Stre¢t
StrOkesto￿a
Ros¢oJDmon
Republic of Irelaod
F42 W285
Trustees
Julie Power
Cecil Armstrong
Jennif¢r Kelly
Sarah Flynn
Vivienne Beattie
Tijnothy Whymark
TadhE Treacy
Independent ex2min*r
M.B.McGrady & Co
Chartered Accountants
Rathtllore House
52 St Patricks Avenkne
Downpatrick
Co. Down
Brjo 6DS
Approved by ordet ofth¢ lyoard of tn￿ on 3011012023 and s]￿ed on its behalf by:
Julie Power
Trustee
Cetil Ar￿￿trOllE
Trwstee
io