The Board of Trustees is most pleased to announce that our Society has become Affiliate members of the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA).  RAIRDA is a forum established to bring together clinical and patient organisations and other key stakeholders in order to improve care for people living with rare autoimmune rheumatic diseases. 

The alliance is made up of the following members and affiliate members.  Members: British Society of Rheumatology, LUPAS UK, SCLERODERMA & RAYNAUD’S UK, VASCULITIS UK, British Sjögren’s Syndrome Association (BSSA). Affiliate members: Behçet’s UK

RAIRDA has three aims.

  1. To raise the profile of the needs of people living with rare autoimmune diseases and their access to timely effective treatment
  2. To promote the implementation of best practice care and pathways
  3. To increase knowledge about patient care through better data

These chime closely with those that the BSS has striven to achieve since its formation in 1983.

So this is great news, as we move forward together to raise comprehensive awareness of Behçet’s amongst all clinicians within NHS primary, secondary and tertiary care, and promoting research into the cause, effects, treatment and management of this rare, complex and debilitating lifelong disease.

I shall be representing you all at their next meeting on 26 July 2018, and will report back thereafter.

In the meantime, more information can be found using this link: Click Here

Tony Thornburn