6th and 7th October 2012 l The Royal Marine Hotel, Dun Laoghaire
This conference was a great success, with 42 patients, carers, and interested Healthcare professionals attending from all over Ireland. The venue was fantastic, with a lovely spacious room for our talks (great views), a designated dining room for our meals, helpful staff and very comfortable bed and breakfast facilities.
Neilmed kindly sent along samples and information about sinus rinse for distribution. The Citizen’s Advice Bureau, Dun Laoghaire, provided information booklets re benefits and rates for people from Southern Ireland and Downpatrick Social Security Office provided the equivalent booklets for people from Northern Ireland. Information on specific Vasculitis diseases was supplied by The Vasculitis Foundation, (there was only a few Granulomatosis with polyangiitis leaflets left at the end of the conference), who also gave magazines, wristbands, balloons and VF logo badges. We had information on Vasculitis UK, two reference copies of their newly printed Routemap for Vasculitis, with details of how to access this either online or by purchasing directly from the Vasculitis UK website. Thank you to all these people who provided this really useful information.
The conference opened with registration, time to meet others, and to look at the information available, and purchase our newly printed Christmas cards. After a welcome lunch of soup and sandwiches (especially for those who travelled long distances),I opened the meeting with a short talk about Vasculitis Ireland Awareness Support group, how we became, what we do, what we plan to do and the importance of fundraising to keep us going.
Dr Eamonn Molloy, Consultant Rheumatologist at St. Vincent’s Hospital, Dublin was the first of our consultant speakers. He gave an very informative overview of Vasculitis and large vessel Vasculitis conditions with particular emphasis on Giant Cell Arteritis and Takyasu Disease and took many interesting questions from the floor, and indeed over the coffee break which followed. I have requested his presentation notes for distribution and will forward these when they become available.
After coffee, Michael Power presented the results of our recent survey on Vasculitis incidence and care in Ireland. I’m attaching this separately for anyone who wants to download it. This was followed by Mark Little’s (Consultant Nephrologist, Adelaide and Meath Hospital, and Researcher into Vasculitis with Trinity College Dublin) talk on his work in to improve services for Vasculitis care in Ireland. Science Foundation Ireland has provided 1.3 million euro to facilitate setting up specialist regional Vasculitis clinics. He has started research between here and the UK, and already has a team compiling patient details for involvement. Those of us not already on this scheme were given the opportunity to participate at the end of his talk thanks to his research team having a stand at the back of the room. His lively presentation brought many varied questions from the floor.
After all the talks there was time allocated for carers to discuss living with Vasculitis and the impact of caring for someone with it, and how it affects their lives.
The enjoyable and plentiful buffet dinner was enjoyed by most delegates followed by lots of chat, sharing stories and fun.
Michael Clarkson, Consultant Nephrologist in Cork University Hospital, specialising in Vasculitis gave our Sunday morning talk, on recent advances in treatment for small vessel Vasculitis (ANCA Diseases). He gave us comprehensive details of current research, in particular the UKVAS Health Tracker, which records patient details, medication and quality of life, and suitability for specific clinical trials. There followed a lively question answer session on Vasculitis treatment and research. (Again, when I get Michael’s presentation notes, I will forward them on to you).
We are indebted to our three eminent speakers for giving us their time and sharing their knowledge of Vasculitis with us. By working together, we will hopefully improve awareness of Vasculitis, and access to current specialist Vasculitis care in Ireland. Thank you also to everyone who attended, meeting each other and sharing our stories made the conference the success it was.