The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) launched a new report today, highlighting the needs of people living with non-genetic rare diseases this Rare Disease Day (28 February 2018)
RAIRDA members are: Lupus UK, Vasculitis UK, Scleroderma & Raynauds UK, British Sjögrens Syndrome Society, British Society for Rheumatology Alliance .. Please follow this link for more information and read the full report vasculitis.org.uk/news/rair...
I am very impressed by this report - not least because it is short and therefore reasonably likely to be read in full by busy professionals.
How are its recommendations to be pursued through the NHS clinicians and administrators concerned? Does RAIRDA have resources - staff, volunteers, money - to do this effectively?
Can this be discussed at the forthcoming Vasculitis UK AGM please?
We do not currently have an implementation plan but this will be discussed at the RAIRDA meeting next week.
RAIRDA does not have resources of its own but it is an alliance between British Society for Rheumatology, VUK, Lupus UK, SRUK and now Sjogrens Society. RAIRDA does have a Parlimentary Affairs Officer who lobbies on behalf of RAIRDA.
This all could be discussed at the VUK AGM but we do need to arrange a speaker.
John
Thanks. I hope you can arrange a speaker. Otherwise, perhaps we can give it a mention under AOB.