![]() |
News
Coronavirus & Meetings Update
Unfortunately due to the current situation with the Coronavirus there will be no Spring support group meetings for 2020. We hope to be able to resume our meetings later in the year. Please see the links below for some useful information about the coronavirus : From the UK Gov website - From Vasculitis UK - Advice for clinicians and patients from the British Society for Rheumatology - A chronic illness patient's guide to Coronavirus from the US based Creaky Joints arthritis patient support group - How to cope with anxiety about coronavirus from the British Association of Behavioural and Cognitive Psychotherapies - |
Autumn Meetings' Downloads
As promised, I’ve uploaded Dr Lucy Turner’s and Catherine Short’s presentations to the website. I’ve also uploaded the website links from my news items on current vasculitis research and flu vaccination advice. They're in the support group section at the bottom of the Useful Documents page. |
Autumn 2019 Meetings
![]() We have two meetings booked for Autumn. The first will be a return to our North Yorkshire venue in Huntington, near York on Sunday the 13th of October. The second will be at our regular venue in Gomersal in West Yorkshire on Sunday the 20th of October. See our meetings page here for more details. |
Spring 2019 Meetings
![]() This first will be a new venue in Driffield in East Yorkshire on Sunday the 17th of March. Hopefully this will be relatively close for folk coming from Scarborough, Hull and York. The second will be at our regular venue in Gomersal in West Yorkshire on Sunday the 24th of March. See our meetings page here for more details. |
East Yorkshire 2018 Meeting
![]() See our meetings page here for details. |
ANCA Associated Vasculitis Patient Survey
Survey on the Withdrawal of Maintenance Therapy for ANCA Associated Vasculitis and SLE ![]() The study they are proposing would be aimed at patients who they identify as being at low risk of relapse and who would currently expect to be having conversations with their clinicians about reducing and coming off their medication. ![]() In order to find out what patients might think about this, Alan and Lorraine have set up an online questionnaire for those of you with AAV or SLE to fill in. So, if you have either : Wegener’s (Granulomatosis with Polyangiitis – GPA) or Microscopic Polyangiitis (MPA) or Churg Straus Syndrome (Eosinophilic Granulomatosis with Polyangiitis – EGPA) or Lupus (SLE) I’d definitely recommend that you have a look and have your say. It’s a great opportunity for us as patients to have a direct input into research into our condition. Potentially making a difference for future patients, if not ourselves. Here’s the link to the online survey : https://www.surveymonkey.co.uk/r/THXPGFJ |
Fundraising for Vasculitis UK
![]() For those of you who knew Lynne Jacques, who sadly died earlier in the year : Gordon Brown, a friend of Lynne’s son Joel, will be running in the Great North Run in September, to raise funds for Vasculitis UK. See the link below for details of Gordon’s Just Giving donation page. ![]() |
Leeds BRC Biologics Presentation 2/8/18
![]() The event is on Thursday the 2nd of August and runs from 10:45am until about 1:00pm. A buffet lunch will be provided free of charge. See the Leeds BRC website here for more details : http://leedsbrc.nihr.ac.uk/event/ask-the-researcher-biologics-and-your-body-how-what-why-and-when/ Or contact Gwyn Cracknell for more information : G.T.Cracknell@leeds.ac.uk |
Support Group Meetings for Spring 2018
![]() |
Scarborough Rare Diseases Meeting
![]() Ruth Newton, the specialist rheumatology nurse at Scarborough Hospital, has arranged another rare disease patient support meeting for Saturday the 10th of March between 10:00 am and 12:00 noon. Family and friends are welcome and light refreshments will be provided at the meeting. |