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
Take on a challenge
Do something incredible and sign up to an event to raise money for our small charity and help us support the 1 in 17 people who will be 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.
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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
National conversation to shape NHS 10 Year Plan
Launch of national conversation to shape the Government’s 10 Year Health Plan Statement from Mark Flannagan, Chief Executive of Genetic Alliance UK
WANTED: Trustees to support over 3.5 million people living with genetic, rare and undiagnosed conditions
Genetic Alliance UK is looking for a Treasurer and up to three Trustees to join our enthusiastic and committed Board during 2025, as part of our Trust Board succession planning
Run Alton Towers
Come and join us at the UK’s biggest Theme Park, Alton Towers, on Saturday 16th and Sunday 17th November 2024 for the 5k, 10k & Half Marathon event around the park.
Hackney Half
A Half Marathon with a difference. Set your 2025 off to the right start by calling your crew to the Wizz Air Hackney Half start line on Sunday 18 May.
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.