Genetic Alliance UK

United Kingdom United Kingdom

About Genetic Alliance UK

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.

Rare Diseases UK provides a united voice for the rare disease community by capturing the experiences of patients and families. It is the official organiser of Rare Disease Day in the UK.

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.

We run two long standing projects:

– Rare Disease UK: A 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.
– SWAN UK: 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.

We have an experienced and long standing staff team with backgrounds in natural and social sciences and are governed by a Board of Trustees made up of representatives from our member organisations.

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