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

They advocate for fast and accurate diagnosis, good quality care and access to the best treatments.

The Alliance actively supports progress in research and engages with decision makers and the public about the challenges faced by its community.

They run two long standing projects:

• Rare Disease UK – a campaign 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.