Welcome to our newest Genetic Alliance Uk member GoPI3Ks (Genetic Overgrowth PI3K Support).

The new EURORDIS-Rare Diseases Europe survey is live. Share your experience of living with a rare or undiagnosed condition, from coping with stress to support and community life. Open worldwide in 25 languages until 16 Nov 2025. Take part here: tiny.cc/RB-MH

Are you impacted by genetic conditions? Join online and share your views on new tests and treatments for genetic conditions during pregnancy. Organised by @goshcharity.bsky.social and @uclchildhealth.bsky.social Find out more at redcap.link/tbl4h8v6

Our CEO, Nick Meade, on a panel at the Labour Party Conference on Monday, asking ‘how can the government deliver its ‘prevention first’ approach to healthcare?’ Read our report, 'Time to Decide': geneticalliance.org.uk/news/time-to...

Are you impacted by genetic conditions? Join online and share your views on new tests and treatments for genetic conditions during pregnancy. Organised by @goshcharity.bsky.social and @uclchildhealth.bsky.social Find out more at redcap.link/tbl4h8v6

It’s the first anniversary of our collaboration with LifeArc 🥳 LifeArc’s Translational Centres for Rare Disease are breaking down the barriers in rare disease research and accelerating the development of new tests and treatments. Learn more on our website geneticalliance.org.uk/news/genetic...

@liverpooluni.bsky.social is recruiting parents/carers of children (0–18) with severe learning disabilities & CVI, attending Alder Hey Children’s NHS FT or Mersey & West Lancashire Teaching Hospitals, for the CVI+ Outcomes Study. Info: www.liverpool.ac.uk/health-and-l...

🚀 We’re hiring! Director of Engagement and Impact Lead strategic membership engagement, deliver impactful comms & help shape a positive team culture. 📅 Apply by 09:00 Mon 22 Sept 2025: geneticalliance.org.uk/who-we-are/j...

We are supporting the development of a new online directory of key players in the rare disease research landscape, with Rare Disease Research UK and LifArc. Please fill in the survey in this post.

We're recruiting! Join us and work with empathetic, skilled and passionate colleagues who are committed to improving the lives of 3.5 million people in the UK living with genetic and rare conditions. Find out more about this role on our website geneticalliance.org.uk/who-we-are/j...

***IMPORTANT UPDATE*** We’re thrilled to announce that Nick Meade has been appointed as the Chief Executive of Genetic Alliance UK and will start his new role on 1 May 2025! Find out more on our website tinyurl.com/5cwvzmzx

Very happy to have a stand @greatormondst.bsky.social tm to celebrate #undiagnosedchildrensday, raise awareness & understanding of SWAN patients, raise the profile of the SWAN #CNS role @gosh and support more families @geneticallianceuk.bsky.social @wendydjones.bsky.social

Thanks to our incredible London Landmarks Half Marathon runners. Each did an incredible job in raising vital funds for Genetic Alliance UK and we can't thank them enough! If you'd like to participate in a future event we'd love to hear from you: ow.ly/Wtkr50Vxbgp

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.