John had an excellent day in London at the inaugural meeting of The Vasculitis Rare Diseases Working Group.. It was really three meetings. One was to discuss the UKVAS registry of people with Vasculitis, one was to discuss the strategy for improving the provision of care for people with Vasculitis and the afternoon session was made up of case studies and current research studies. John will give a summary at the Yorkshire Support Group Meeting and the Vasculitis UK AGM.
John has had such an amazing day.. it was interesting and stimulating and afterwards he went to the pub with them all for a pint... John says it was very positive day for everyone with Vasculitis. There will also be a summary of the meeting in the Autumn newsletter.
Excellent news! Looking forward to hearing more.
John said it was a huge step forward for the vasculitis patient and this meeting was just the beginning.. another meeting next month besides the consultation with the BSR.
What with the release of the Route Map at the AGM with hopefully media cover and the official launch in London with Genetic Alliance and the Dept of Health in July. Things are looking good for raising awareness about Vasculitis in 2012, with the medical profession, the government and the public!. 