@geneticallianceuk.bsky.social
Welcome to our newest Genetic Alliance Uk member GoPI3Ks (Genetic Overgrowth PI3K Support).
October 9, 2025 at 11:29 AM
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
October 2, 2025 at 1:31 PM
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
Reposted
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
@goshcharity.bsky.social and @uclchildhealth.bsky.social
Find out more at redcap.link/tbl4h8v6
September 25, 2025 at 9:00 AM
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
@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...
October 1, 2025 at 3:21 PM
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
@goshcharity.bsky.social and @uclchildhealth.bsky.social
Find out more at redcap.link/tbl4h8v6
September 25, 2025 at 9:00 AM
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
@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...
September 17, 2025 at 11:45 AM
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...
CVI+ outcomes study | Faculty of Health and Life Sciences | University of Liverpool
The CVI+ outcomes study focuses on what outcomes are important to children who have cerebral visual impairment plus profound and multiple learning disabilities (CVI+).
www.liverpool.ac.uk
September 10, 2025 at 8:38 AM
@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...
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
August 28, 2025 at 10:59 AM
🚀 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...
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.
🧩 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
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
August 20, 2025 at 1:47 PM
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...
July 28, 2025 at 1:08 PM
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
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
April 30, 2025 at 9:10 AM
***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
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
Reposted
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
April 24, 2025 at 7:12 PM
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
If you'd like to participate in a future event we'd love to hear from you: ow.ly/Wtkr50Vxbgp
April 9, 2025 at 8:57 AM
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
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.
March 28, 2025 at 10:18 AM
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.