Vasculitis Rare Disease Working Group Meeting April 18th 2012

[John_Mills]

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.

[Ayla Volunteer]

Excellent news! Looking forward to hearing more.

[John_Mills Volunteer in reply to Ayla]

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!.

[BooBoo39 Volunteer]

Well Done John ! on your continued hard work in promoting vasculitis awareness

Jo x

[John_Mills Volunteer]

Hi Mary,

The meetings which will be attended by John are by invatation only and not open to the public.

The AGM and launch of the Route Map for Vasculitis is open to everyone and is on Sunday 13th May, you can leave a message here if you would like to attend.

The official launch of the Route Map with Genetic Alliance and the Department of Health will be held in London in July and is also by invatation only.

John will talking about is role as the Vasculitis patient representative as part of his chairman's report at the AGM and will be writing a summary for the Autumn newsletter.

Patricia Fearnside will be giving a presenation of the Route Map at the AGM on Sunday May 13th. Pat will also write a summary of both the Vuk launch and the Genetic Alliance launch of the Route Map in the Autumn newsletter.

Hope this helps.. are you down on the Vuk data base to receive the newsletter?

all the best

Susan

[John_Mills Volunteer]

there are 2 support groups near where you are..Oxford and there is one in Surrey...all our members have received flyers about the support groups. The Surrey support group has a meeting in a few weeks. If you private message me with your home address I will put you some info in the post and put you on the data base.

All the best

Susan