This was announced yesterday that John Mills chairman of Vasculitis UK has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe.
😊 EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation in the decision-making processes around European Reference Network eurordis.org/content/newly-...
Congratulations John, they need people like you to put some oomph into the discussions!
Great news John - Congratulations!
I haven't read all the 'blurb', on this but......Well done John, I KNOW we can all rely on you!
Best wishes AndrewT
Congratulations John I'm sure you are exactly the right person to speak up for all of us Thanks Judy
Congratulations John. 
Congratulations John well deserved
I notice the name Sophie Wintrech (I think that's the right spelling)-Where have I heard that name before?
Why would it upset anyone ? John applied to EURORDIS and was elected by the EURORDIS members along with Peter Verhoeven from the Dutch Vasculitis Support Group. The ERN rare autoimmune and auto inflammatory diseases of which vasculitis is just one. EPags are patient advisors to the ERN. ( (European Reference Network.) The meetings are done by teleconference and email. If there were expenses concurred EURORDIS would be responsible. The ERN's of which there are many, are funded by the EU.
John has also just been appointed to be a PPV (patient and public voice) for the new Rheumatology a Specalised Services Clinical Reference Group (CRG) , here in the UK. John applied for this position and again was elected by the CRG membership. Most meetings are held by teleconference any expenses concurred are the responsibility of the CRG.
UPDATE: More than hundred responses! We did it!
Cycle 5, more appointments and a rant about parking costs
If vasculitis is remissioned, progression of renal damage is stopped?
Uveitis treatment opinion please 
