Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
ID: 413849446
http://www.geneticalliance.org.uk 16-11-2011 10:07:51
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15,15K Followers
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Developed and funded by HRA Pharma. Learn about the work HRA Pharma is doing to raise awareness, as well providing treatment for rare conditions such as Cushing’s Syndrome. Find out more in ‘Rare Conditions: The Stories Behind the Stats’ with ITN Business: ow.ly/8y7K50QNkxW
How does your rare disease impact your daily life? Tell us about it in the new #RareBarometer survey! Survey available here in 25 languages 👉ow.ly/Afxx50T195o EURORDIS-Rare Diseases Europe
Guess what? 👀 The Student Voice Prize is back for 2024! Updates on #SVP24 will now be posted on our Instagram account, @rarebeacon and Medics4RareDiseases 🔔 🔗 rarebeacon.org/student-voice-… See the key dates below: 👇
Are you or one of your family known to have been affected by this particular genetic cause of #cavernoma- the #CCM2 mutation? If so PLEASE consider participating in this survey to help Genetic Alliance UK smartsurvey.co.uk/s/KN8ER6/
The Scottish Government published the first Rare Disease Action Plan Progress Report. It contains renewed priorities for 2024/25. Genetic Alliance UK will continue to work with the Scottish Government to deliver the Action Plan for Scotland. 👀 ow.ly/WYwZ50T479x Jenni Minto MSP
3 days to put in your nominations for the EURORDIS-Rare Diseases Europe #BlackPearlAwards 👇
Taking about grief to children can be hard. Apart of Me is a game where young people are given a virtual guide to help explore, understand and articulate the experience of grief and the emotions connected to it. Learn more and download now: ow.ly/vxQl50T8lF2
In Metabolic Support UK's latest #Metabolic Matters magazine, they explore the topic of #grief and share stories from the community. You can read the full issue online now: ow.ly/7CEb50T8lp2 #NationalGriefAwarenessDay
Today is my first day as Chief Executive of Genetic Alliance UK. Looking forward to working with all our partners. Feel free to follow me and I will follow back. #Health #rarediseases #genetics #genomics #NHS #healthpolicy
GA–UK MEMBERS! Check your email for your invitation to our virtual 2024 AGM on Tues 10 Sept 2024 from 10:00-11:00. What we do and how we do it affects you and your community so join us via Zoom and make your vote count! Email [email protected] for info.