raccuk

Rare Autoinflammatory Conditions Community - UK (RACC-UK)

Rare Autoinflammatory Conditions Community - UK (RACC-UK) ​ RACC - UK is the UK’s patient-run, patient charity for patients and families suffering from #Rare Autoinflammatory conditions. We are a completely self-funded organisation, led by volunteer patients, parents, and experienced Medical Professionals, in the fields of Rheumatology, Immunology and Nephrology. We also have several closed private Facebook discussion groups with over 400 members from the UK suffering from #Rare Autoinflammatory conditions. In addition, RACC - UK, are RIPAG members of the European Reference Network, Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune (RITA) diseases. Also, we are involved in the EURORDIS Drug Force Task, DITA (2019-2020) We are registered stakeholders for NHS Clinical Reference Groups relevant to Autoinflammatory conditions. ​ Background Patients in the UK with Autoinflammatory conditions have often endured a long delay to diagnosis which impacts on long-term health and quality of life. Autoinflammatory conditions are #Rare genetic diseases which often leave patients feeling vulnerable and isolated with little support.

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