Genetic Alliance UK, the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK, are calling on all General Election 2024 candidates to pledge their support for our communities.
We are asking candidates to pledge their support for people living with genetic, rare and undiagnosed conditions by:
- Helping people get a timely and accurate diagnosis
- Raising awareness of these conditions within the NHS
- Ensuring people have access to coordinated care
- Improving access to specialist care and treatment
Candidates! We’re asking you to
- register your intent by completing our candidate pledge form.
- post your pledge on your social media using the hashtag #PLEDGE4GRU
- become a champion for people with genetic, rare and undiagnosed conditions if you are elected
Questions? Contact us via [email protected]
See which candidates have pledged support so far
Manifesto for rare conditions
Our pledge campaign is based on a manifesto developed by Genetic Alliance UK and the Specialised Healthcare Alliance (SHCA).
The manifesto sets out our calls to action in more detail, including policy changes that could:
- Help patients get a timely diagnosis
- Increase awareness among healthcare professionals
- Improve the coordination of care
- Increase access to specialised care, treatment and drugs
About Genetic, Rare and Undiagnosed Conditions
Our website has information on genetic, rare and undiagnosed conditions and you can also learn more about the challenges faced by the community by downloading our factsheets:
Who are Genetic Alliance UK?
Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our members and the people they support are at the heart of everything we do.
We advocate for fast and accurate diagnosis, good quality care and access to the best treatments. We actively support progress in research and engage with decision makers and the public about the challenges faced by our community.
We run two long standing projects:
Rare Disease UK: A campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible, and 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.
Genetic Alliance UK works with elected representatives to raise awareness of genetic, rare and undiagnosed conditions and help ensure that individuals and families affected by these conditions have access to appropriate care and support.
Genetic Alliance UK also provided the secretariat for the APPG on Rare, Genetic and Undiagnosed Conditions. The group brings together people affected by genetic, rare and undiagnosed conditions, support group representatives, health care professionals, researchers and parliamentarians to discuss the challenges of people living with these conditions and find ways forward.