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.
Who we are
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.
What we do
Around 3.5 million people in the UK are affected by rare conditions, which are individually rare but collectively common.
We campaign for timely diagnosis, better coordinated care, and improved screening, testing, services and treatment.
We campaign for timely diagnosis, better coordinated care, and improved screening, testing, services and treatment.
Our long-standing projects
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.
8 in 10
rare conditions are caused by a change to someone’s genetic code
Our member organisations
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.
1 in 17
people are affected by a rare condition at some point in their lives
Donate
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.
Become a member
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.
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Latest from Genetic Alliance UK
See what you've missed by taking a look at our latest News, Events and Resources
A ‘Manifesto for rare diseases’ ahead of coming General Election
Genetic Alliance UK and the SHCA have come together ahead of the General Election to develop a joint manifesto for people with rare conditions. While they are individually rare, collectively rare conditions are common – 1 in 17 people are affected, equating to 3.5 million in the UK alone.
Violet’s story
From her birth in 2022, Violet had many tests done. In 2023 she was diagnosed with TBCK syndrome. Violet's case was presenting as severe and life limiting. At 11 months old, she passed away. This is her story.
Joint Nation Rare Disease Day Online Event
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.
Rare Disease Day 2024 Westminster event
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.
Rare Resources: Wales
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.
Rare Resources: Scotland
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.
Contact Genetic Alliance UK
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.