Share4Rare - Rare Diseases Advocacy Project

[RichardE]

This link just popped up for me via an EUPATI (European Patients' Academy) newsletter.

It's a project for patient advocacy in rare diseases. They have a toolkit with all sorts of interesting ideas for patients who want to advocate and promote awareness, research and so on for their rare disease. I thought it might be useful for those members on here who perhaps run patient support groups and are interested in ideas to spread the word about their groups and generally promote awareness and support for vasculitis patients.

share4rare.org/library/shar...

[Lone-wolf]

Hello Richard,

I think that at Vasculitis UK we already do most of these things within our community and beyond and that it would be very useful for organisers of local support groups. Within the London area I already advise my local surgery doctors and also patients with any of the vasculitides as to support and in some cases claiming benefits, although that is proving a little difficult nowadays.