London, England, E17 6DS United Kingdom

Mission Statement

Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our members and the people they support are at the heart of everything we do. We advocate for fast and accurate diagnosis, good quality care and access to the best treatments. We actively support progress in research and engage with decision makers and the public about the challenges faced by our community.

About This Cause

People living with genetic, rare and undiagnosed conditions face waiting years for a final diagnosis, limited understanding from healthcare professionals and poor coordination of care - all of which can have a huge impact on mental and physical health, and can prevent equitable access to work and education. We work closely with our member organisations, the NHS, healthcare professionals, the Government and Parliaments across the UK to champion best practice in care coordination and good diagnosis, examine service provision and ensure that the voices of the rare, genetic and undiagnosed communities are heard in rare disease policy and legislation. We are an alliance of over 230 patient organisations and we run: SWAN UK (syndromes without a name), the only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. Rare Disease UK, our national campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that people and families living with rare conditions have access to a final diagnosis, coordinated care and specialist care and treatment.

Creative Works 7 Blackhorse Lane 7 Blackhorse Lane, London
London, England E17 6DS
United Kingdom
Phone 0300 124 0441
Unique Identifier 1114195