We try to meet every three months in Belfast, Dublin and Galway.
Dates, times and venues will be posted on the website and our Facebook page, and by email to those on our mailing list.
These meetings will be mostly coffee and chat events, where we can meet others living with the same issues associated with living with Vasculitis and learn from each other. Occasionally when requested, a speaker will be organised to give more detailed information about managing symptoms, services available and self help coping mechanisms.
COME JOIN US FOR A VIRTUAL SUPPORT GROUP MEETING. Tue 28th April 11am
On Tuesday the 28th April at 11am grab a coffee fire up the computer, laptop, tablet or just use the phone and click on the link to join us (the more the merrier)
Join Zoom Meeting
Meeting ID: 947 5387 0893
We will be joined by Vicky who is the new Rare Kidney Disease Research nurse and she will be talking to us about the PatientMpower app, how to download it, how to use it and why we should use it.
To help us with call management, you are welcome to join with video and audio, but when not speaking we would ask you to remain on mute and raise your virtual hand when you need to speak. This helps reduce background noise and ensures everyone is heard. We will be using a waiting room facility and the password to help keep the call secure.
We had a well attended meeting on 4th April, where among our attendees we had two research nurses from Cork, the chair of Behcet’s UK and two researchers from the HELICAL project (a European wide project which is looking at gathering registry and biobank data from all over Europe to learn more about the various Vasculitis diseases, treatments available and possible triggers). It was good to catch up with members from all over the island and be introduced to some new people too. A little bit of’ my place and yours’.
The conversation was varied and interesting, from issues when being newly diagnosed, attending appointments, fatigue management, and using our PatientMpower app to help us and the researchers learn more about Vasculitis and exposure to Covid-19 pandemic. The second half of the meeting was based on discussions about how we felt about our data being used in research, what is important to us, what our concerns are, what misgivings we have and what we would like. This was led by Nathan Lea and Maria Christofidou (HELICAL researchers) and hopefully they will join us to feedback at our next meeting. They will continue to liaise with us to help inform their project of the patient voice in this important area.
I am attaching the presentation given to us at our 2015 annual Vasculitis conference by Dr Neil Basu, who has been very involved in researching Fatigue. I’m also attaching a presentation given in 2014 by a physiotherapist at Harold’s Cross Rehab unit.
COME JOIN US FOR A VIRTUAL SUPPORT GROUP MEETING. Sat 4th April 11am to 1pm
On Saturday the 4th April at 11am grab a coffee fire up the computer, laptop, tablet or just use the phone and click on the link to join us (the more the merrier)
If you are asked for a password it is 772784.
We hope you and yours are keeping safe and well in these uncertain times.
This virtual meeting will be a chance for us to talk about the present situation we all find ourselves in. and we will be joined by several speakers from Cork University hospital, and Leeds to speak to us about Patient data in research and find out our views and experience to help in a European wide research project (HELICAL).
To help us with call management, you are welcome to join with video and audio, but when not speaking we would ask you to remain on mute and raise your virtual hand when you need to speak. This helps reduce background noise and ensures everyone is heard.
We really look forward to you joining us on Saturday. This is a very new venture for us and we would love if you could be there.
Stay Safe and Well,
Report and links to the 2019 conference held in Newcastle, Co. Down
NI Vasculitis Survey Interim findings
Link to VINE (local clinics options in Republic of Ireland):
Link to AVERT study information:
Link to patientMpower app:
iOS (iPhone Apple):
Google Play (Android):
NORTHWEST AREA – SLIGO MEETING
in lobby of Sligo Southern Hotel on Friday evening 24th January,7pm-8.15. Hotel is next door to the Sligo Bus and Train station so handy for public transport. We look forward to seeing you there. Let us know if you plan to come along so we have an idea of numbers.
For those in the Belfast and surrounding area, Come along to Dobbies, Lisburn for a Coffee and Chat on Monday 20th January. Meet others living with Vasculitis and lets make plans for 2020. Send us a message if you intend coming so we have an idea of numbers. Looking forward to seeing you there. Julie
Saturday 2nd November 2019, Bru Columbanus, Cardinal Way, Wilton, Cork 11 -1pm
We have Tim O’Sullivan and some of his team from Arthritis Ireland coming along to talk about the courses, services and workshops
Wednesday 20th November 2019, Fir Trees Hotel, Strabane, 6.30-8pm
Tea/coffee and scone
Saturday 30th November 2019, Killough Community Hall, Killough, Co. Down 11am-1pm
Tea/coffee and home baked goodies
Talk and demonstration by Mary Jane Burns, from Holistic Health and Well being company.
Carers and family welcome.
Saturday 2nd November 2019, Cork 11 -1pm
Bru Columbanus, Cardinal Way, Wilton, Cork
Tel: (021) 434 5754
The meeting will be from 11am-1pm and we have Tim O’Sullivan and some of his team from Arthritis Ireland coming along to talk about the courses, services and workshops that they run which could be useful to our members.
Saturday 26th October 2019, Irish St Community Centre, 19 Bann Drive, Derry/Londonderry 2-4pm
Foyle and NW forum meeting coffee and catch up
Friday 15th March, Jury’s Inn, Anderson’s Quay, Cork 4-5.30pm. Planning meeting for future meetings in the Munster area. Organiser Julie Power, Facilitator Seamus Beausang.
Wednesday 20th March, Tallaght Hospital, Seefin room (First floor in the education centre), 4-5.30pm. Focus group meeting on what we else we would like from the Vasculitis PatientmPower app. This is being jointly organised by researchers from TCD who are working on this and hope to possibly develop links to useful information for us in living with vasculitis. Organisers Julie Power (VIA), Kevin Morris, Lucy Henderson(both TCD Research).
Thursday 5th July, Fir Trees Hotel, Strabane, 7pm-8.30, Organiser Julie Power and Karen Gallagher (firstname.lastname@example.org)
Saturday 14th July, Committee meeting, The Central Hotel, Dublin, Time 12.30-2.00. Organiser Patricia Ryan (email@example.com)
Tuesday 29th May, 2018, Committee meeting at the Future Health Summit, Conference Centre, Dublin, 11am-12.30,
Thursday 8th May, 2018, Fir Trees Hotel, talk about Patient Buddy app.Strabane, 7pm-8.30, Organiser Julie Power
Saturday 21st April, 2018, NI Behcet’s support group meeting, Lisburn Library, 11am- 1pm. Organiser Fionnuala McKinney.
Friday 13th April, 2018, Coffee and Chat in Dobbie’s Cafe, Lisburn, 3pm-4.30. Organiser Emma Tinsley.
Wednesday 11th April, 2018, Coffee and Chat in Royal Marine Hotel, Dun Laoghaire, 11am-12.30. Organiser Vivienne Beattie.
Saturday 31st March 2018, Coffee and Chat in Cass and Co, cafe Dungarvan, 11am-12.30. Organiser Julie Power
Monday 12th March 2018, 11am- 1pm, PMR/GCA UK,NI support group meeting, Premier Inn, Lisburn
Saturday 9th December 2017, Annual Christmas Lunch, 1.30pm – 3pm, Cafe Parisien, Belfast.
Saturday 28th and Sunday 29th October 2017, Sixth Annual All Ireland Vasculitis Conference, 11am(28th) – 12noon(29th), Royal Marine Hotel, Dun Laoghaire, talks from a patient and carer panel about living with Vasculitis, Updates on progress of Vasculitis Care Pathway, latest research in Vasculitis, ENT issues, Bone Care, Patient Buddy App, and Fatigue management techniques.
Monday 9th October,2017, 11am – 1pm, PMR/GCA UK, NI support group meeting, Premier Inn, Lisburn
Monday 26th June 2017, 11am- 12.30, Let’s Talk About Work, Alternatives and Retirement, Nikki’s Cafe, Newcastle, Co. Down
Friday 12th May 2017, 3pm-5pm, Let’s Talk About Travelling with a Chronic Illness, Tesco Extra, Banbridge
Saturday 25th March 2017, 12noon- 2pm, Let’s Talk about Welfare Reform, Tesco Community room, Newtownbreda, Belfast. Two of our members attended a CAB workshop on welfare reform and how it would affect people living with Vasculitis. This was an opportunity to feed back some of the information and guidance to our members.
25th February 2017, Lisburn city Library, 11am-1pm. Sarah Trimble, Nutrition Therapist shared information on diet and the immune system, managing inflammation and reducing risk of depression. This was kindly organised by the NI Behcet’s support group, the organiser being Fionnuala McKinney. Notes from this meeting are available.
8th February 2017, Croi House, Galway city, 6pm – 7.30pm, Coffee and Chat. We are keen to set up a west of Ireland support group branch, several people joined the organiser Patricia Ryan and it is hoped this could be repeated with more people attending in the future.
28th February 2017, Joint North and South Rare Disease Day, events were held in Dublin and Londonderry for Rare Disease Day 2017, we had several members attending and an information stand at the Dublin event.
All Ireland Vasculitis Conference, was held on 5th & 6th November 2016, in the Royal Marine Hotel, Dun Laoghaire, Co. Dublin.
Dr Sarah Mackie visited from Leeds to talk about her work with Large Vessel Vasculitis, Giant Cell Vasculitis and Polymyalgia Rheumatica, Prof Mark Little, Dr Eamonn Molloy and Dr Sarah Moran talked about developments in Vasculitis in Ireland, Chartered Psychologist, Patricia McCrystal talked about the effect of chronic illness on relationships, Physiotherapist, Aine Kelly talked about Exercise in Vasculitis, do’s and don’ts, and we finished on Sunday with gentle mindfulness and relaxation exercises.
We had our AGM at 9.30 on Sunday morning of the conference, 6th November.
Cork , 6th December, Jury’s Hotel, Anderson’s Quay, 6.30-8.30 Coffee and Chat
7th December, Clarion Hotel, Cork city, 9.30-5pm
‘National Scleroderma + UK & Ireland Vasculitis Society Meeting’
Check back here or our facebook page for details of future meetings.