Does your child have a severe to profound learning disability and Cerebral visual impairment (CVI)? Researchers at the University of Liverpool are looking for parents/carers of children aged 0 - 18 to take part in an online survey about vision related outcomes for children with CVI.

How can the UK better support innovation in #RareConditions research? A new report from @geneticallianceuk.bsky.social and the @lifearc.bsky.social Translational Centres Hub explores novel trial designs, AI and multimodal data – and calls for renewal of the UK Rare Diseases Framework. bit.ly/40xbH6b

Genetic Alliance UK is pleased to welcome @sharonhodgsonmp.bsky.social as the new Parliamentary Under-Secretary of State at the DHSC, as we also share our gratitude to Ashley Dalton MP. Read our full welcome and thank you messages on our website: geneticalliance.org.uk/news/welcome...

It’s been a busy and inspiring few days for our team, connecting with partners across the rare disease community for #RareDiseaseDay2026. You would have found us at Kings Cross station with @lifearc.bsky.social and at Guy’s and St Thomas’ NHS Foundation Trust with @uniquecharity.bsky.social .

This #RareDiseaseDay, we’re highlighting how open data sharing supports diagnosis, research, and families living with rare conditions. Watch to find out how access to rare disease data through @deciphergenomics.bsky.social can help families better understand their children’s rare conditions.

It’s #RareDiseaseDay 2026! 🎉 This #RDD2026, find our report, ‘Equity for Rare: Delivering fair healthcare systems for people with rare conditions’, our 4 inequity info sheets and our community-generated equity illustration on our webpage: bit.ly/4awcuKl

Join the community in coming together to raise awareness for #RareDiseaseDay2026 at our Joint Nation online event on Thursday 5 March, at 10.00 - 12.00. Register your place now: www.eventbrite.co.uk/e/rare-disea... #RareDiseaseDay #RDD2026 #Rarequity

Inclusion by Design shares practical recommendations to tackle structural and cultural barriers to #PPIE in academic research, with input from @rdrukhub.bsky.social and @lifearc.bsky.social Translational Centres for #RareDisease Research. Read the report here: geneticalliance.org.uk/wp-content/u...

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...

LifeArc@lifearc.bsky.social · last yr.

🎉Today marks one year of the LifeArc Translational Centres for Rare Disease. These four Centres are breaking down the barriers in rare disease research and accelerating the development of new tests and treatments. #RareDisease #LifeArcTCRD #OneYearOfImpact

@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...

Job vacancies

We seek empathetic, skilled and passionate professionals who can help us achieve the vision and values set out in our current 5-year strategy.

geneticalliance.org.uk

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.

Rare Disease Research UK@rdrukhub.bsky.social · last yr.

🧩 Are you involved in rare disease research in the UK? RDR UK & @lifearc.bsky.social are building a tool to map the rare disease research landscape — and your input matters! Researchers, patients, families, carers & rare disease advocates — 📝please take the survey tinyurl.com/RDRLDproject

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...

Job vacancies

We seek empathetic, skilled and passionate professionals who can help us achieve the vision and values set out in our current 5-year strategy.

geneticalliance.org.uk

@goodmovesjobs.bsky.social · last yr.

Engagement & Support Officer @geneticallianceuk.bsky.social Deliver events & create a supportive community for families in Scotland living with genetic, rare, & undiagnosed conditions. 🕑6-month pilot project - 28hrspw 💵£29,500 pro-rata 📍Scotland (home based) tinyurl.com/5eaxm7hc #engagement

***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.