Around 3.5 million people across the UK are living with a rare, genetic or undiagnosed condition.

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.

We know that high quality care transforms lives

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.

As a charity we rely on the generosity of our brilliant supporters who donate to or fundraise for us. As with many charities, we are seeing a reduction in donations due to the cost of living crisis and we urgently need your support.

If you can, please donate or host a fundraiser to support our work, or simply share this campaign so it reaches more people.

Your support will support our vital work to influence senior decision makers in government and the NHS, raise awareness among healthcare professionals and the wider public, and provide a strong voice for the rare, genetic and undiagnosed community.

Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. 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.