user

Rare Autoinflammatory Conditions' Community- UK (RACC-UK)

Non-profit Organization Management

Overview

Rare Autoinflammatory Conditions Community - UK: RACC - UK is the UK’s only patient-run, charity for patients and families affected by #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 growing closed private Facebook discussion groups with over 400 members residing in the UK and 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. 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. Registered Charity Number: 1184846