![]() ![]() It was good to catch up with members from all over the island and be introduced to some new people too. 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). 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. Upcoming meetings:- Informal online Cocoa and Chat meeting Thursday 27th October, 2022, 7-8pm. Occasionally when requested, a speaker will be organised to give more detailed information about managing symptoms, services available and self help coping mechanisms. 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. We will be using, a waiting room facility and the password to help keep the call secure.ĭates, times and venues will be posted on the website and our Facebook page, and by email to those on our mailing list. This helps reduce background noise and ensures everyone is heard. 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. We endeavour to have a meeting every month, on various topics, different speakers and updates on living with Vasculitis. ![]() Since the onset of COVID 19, all our meetings have been online, using the ZOOM platform. ![]()
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