SWAN UK
SWAN UK is 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.
Genetic Alliance UK is an alliance of over 200 charities and support groups working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions.
We run Rare Disease UK which provides a united voice for the rare disease community and raises awareness each year by leading on Rare Disease Day. We also run SWAN UK, which supports children, young people and families affected by undiagnosed genetic conditions and raises awareness each year by leading on Undiagnosed Children's Day.
SWAN UK is 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 is a long-standing and pioneering national campaign by Genetic Alliance UK that represents and unites everyone in the rare disease community.
Our membership includes representatives from many of the 7,000 conditions that are genetic and rare, and new conditions are regularly identified through scientific progress. We welcome member organisations of all sizes, from very small support groups led by the parents of children with rare conditions to much larger and well-known charities.
Steve White, Vice Chair and Trustee, CUREUsherGenetic Alliance UK invites and empowers us all to take our own agendas, our own considered concerns for those we represent to places that we might not have been able to reach on our own. One passionate voice, anchored in authenticity and patient centricity clearly, has meaning – many voices anchored by the same spirit has a power and an insistence that is unified, disruptive and made for change.
Genetic Alliance UK is a small and impactful charity with a mighty mission. We work tirelessly with our member organisations to improve the lives of the 3.5 million people in the UK with a rare, genetic or undiagnosed condition. We need donations to help us continue our vital work.
Membership of Genetic Alliance UK is open to organisations, groups and charities associated with genetic and/or rare conditions. Take a look to see if your organisation is eligible to join.
Sally is 19 years old and has Spinal Muscular Atrophy type 2. She is a boccia player on the Boccia UK World Class Programme and making her Paralympic debut in Paris August 2024, before she starts university to study Music in September. In this blog Sally talks about her boccia journey to date and how people can get involved.
Luis is diagnosed with Nascimento X-linked intellectual disability. Now his family is doing all they can to raise awareness and build a community for others. This is their story
Genetic Alliance UK are excited to be hosting the annual Rare Disease Day Parliamentary event in Westminster! Rare Disease Day is an annual international day aimed at raising awareness and highlighting the needs of people with rare conditions.
Genetic Alliance UK are excited to be hosting the annual Rare Disease Day Parliamentary event in Westminster! Rare Disease Day is an annual international day aimed at raising awareness and highlighting the needs of people with rare conditions.
The Rare Resources guides have been produced by Genetic Alliance UK for families who have recently received a diagnosis of a genetic or rare condition, are on the journey to a diagnosis or who have been told their child’s condition is so rare they might not get a diagnosis.
The Rare Resources guides have been produced by Genetic Alliance UK for families who have recently received a diagnosis of a genetic or rare condition, are on the journey to a diagnosis or who have been told their child’s condition is so rare they might not get a diagnosis.
You can reach the friendly Genetic Alliance UK team via the link below. We will get back to you as quickly as possible. Before you do, take a look at our most frequently asked questions located on the same page.