Rare Autoinflammatory Conditions Community - UK (RACC - UK)

 Patient Groups / by m4rd / 359 views

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.

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 conditions which often leave patients feeling vulnerable and isolated with little support. RACC – UK believes that no patient should have to suffer on their own.

Today, we care for around 400 patients affected by a range of Autoinflammatory conditions living in the UK, as well as their families and carers. Our services include peer support (group support), 1:1 support, educational support not only of understanding Autoinflammatory conditions but also liaising with schools for school support, liaising with medical professionals, supporting patients on how to navigate the referral processes in the NHS and ensuring they have relevant professionals involved to diagnose and treat their conditions.

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