What we do

Genetic Alliance UK is an alliance of over 200 charities and support groups. We are a small and impactful charity with a 30-year track record of working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions.

Although these conditions are individually rare, they are collectively common. Taken together, there are around 3.5 million people living with genetic and rare conditions in the UK.

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.

Genetic Alliance UK’s purpose is to work together to improve the lives of the 3.5 million people in the UK living with lifelong and complex genetic, rare and undiagnosed conditions.

Our impact

We listen to the needs of our members and make sure our voices are stronger when we collaborate and work together. We focus on:

  • Better care in genetic, rare or undiagnosed conditions. Such as getting a timely diagnosis, having better coordinated care and accessing more treatment options, no matter where you live in the UK
  • Meaningful progress in medical research. Led by the views and voices of people living with the conditions being researched
  • Boosting awareness of genetic, rare or undiagnosed conditions. Making it easier for others to understand what life with these conditions is like
  • Improved information and support for people living with a genetic, rare or undiagnosed condition. Ensuring that people with these conditions are more informed and can connect with others

We’re proud to amplify the diverse voices of member organisations that support and represent people living with specific genetic and rare conditions. 

Genetic Alliance UK's Impact Report cover. A young girl smiles up to an older woman. The young girl sits in a wheelchair and holds a lizard. She wears a colours patterned top.

View our 2022/2023 Impact Report

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How we do it

We have a direct and lasting impact on everyone with a genetic, rare or undiagnosed condition. We couldn’t do what we do without our members, and our successes come from working together. We drive change through:

  • Publishing meaningful reports that make a real difference like our Good Diagnosis Report and  Coordinating Care Report, which highlight the crucial role of timely diagnosis and better connected care for people with genetic, rare or undiagnosed conditions
  • One-off and regular campaigns such as our long-term campaign Rare Disease UK, which provides a united voice for the rare disease community, and the annual awareness-raising event Rare Disease Day
  • Providing and showing ways that people can get more support and better information We lead SWAN UK (Syndromes Without A Name), the only UK support network for children, young people and their families affected by a genetic condition so rare that it does not yet have a name 
  • Working closely with the UK  and devolved nation governments and other decision-makers We manage and oversee rare disease parliamentary groups across the UK, ensuring that these conditions remain at the top of the UK political agenda. We also work hard to ensure that decision-makers are on-course to meet the ambitions set out in the UK Rare Diseases Framework


You can better understand Genetic Alliance UK’s aims and objectives in greater depth through our five-year strategy.

Genetic Alliance UK amplifies the voices of the genetic, rare and undiagnosed community, making a significant difference to the lives of millions. Join us in this vital mission and be a part of a compassionate, caring community committed to making change happen.

Support our work

Help us continue our work to improve the lives of the 3.5 million people in the UK living with lifelong and complex genetic, rare and undiagnosed conditions