Rare Autoinflammatory Conditions Community – UK (RACC – UK) was set up to relieve the needs of patients, families and carers affected by Autoinflammatory conditions in the UK by:
(a) Providing information, support and advice.
(b) Raising awareness of Autoinflammatory conditions.
(c) Providing data when supporting research in relation to Autoinflammatory conditions.
Patients with Rare Diseases “are faced with common challenges derived from the rarity of their conditions and aggravated by the low priority given to rare diseases globally. Rare diseases are often chronic, progressive, degenerative, disabling, and life-threatening. A long road to diagnosis, lack of adequate treatments and care are challenges faced by rare disease patients around the world”
RACC – UK is led by an enthusiastic and motivated Board of Trustees with a range of professional backgrounds. The work is driven by patients, families, carers, and experienced medical professionals, in the fields of rheumatology, immunology and nephrology. RACC – UK is also represented by Rachel Rimmer as a RIPAG member of the European Reference Network, Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune (RITA) diseases. In addition to this, RACC – UK are registered stakeholders for NHS Clinical Reference Groups relevant to Autoinflammatory conditions.
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