Rare Autoinflammatory Conditions Community - UK (RACC-UK)
Mission: Being a voice for patients, families and carers living with an Autoinflammatory condition
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” [Vision, mission & objectives – Rare Diseases International]
Due to her own patient journey and the challenges she faced, RACC – UK was founded by Rachel Rimmer in 2017. Rachel was diagnosed at 16 years old with a Rare Autoinflammatory condition called Mevalonate Kinase Deficiency (HIDS), despite being symptomatic since birth. She graduated from Oxford Brookes University in 2014 with BA Hons in Early Childhood Studies.
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.