🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

An ‘orphan medicine’ is a name given to a medicine that treats a rare condition, a condition that affects less than 1 in 2,000 people. Are there any other terms you’d like us to tell you about?

"Wales This Week: Fighting For Answers" Rare diseases affect around 170,000 people in Wales. We follow one family's campaign to find a diagnosis after losing their son to a rare disease last year. Genetic Alliance UK itv.com/watch/news/wal… via ITVX

The sell out, Bath Half marathon will be back in 2026 and we want you to be part of it! Take part in one of the UK's most established road races on 15 March 2026! Book early to avoid disappointment and leave plenty time for training and fundraising! ow.ly/LAgh50VHMcJ

The UK Rare Diseases Framework is vital for our community. @GeneticAllianceUK, alongside SHCA, has urged Wes Streeting to ensure its renewal and to recognise rare conditions in the NHS 10 Year Plan. Find out more and how you can get involved: geneticalliance.org.uk/news/10-year-h…

“Platform-based approaches, like genome editing with CRISPR offer a scalable way to treat even the rarest diseases. This at last makes treatment a realistic prospect for thousands of families.” Read more from our CEO in New Scientist's newly-published article ⬇️⬇️⬇️

Our CEO, Nick Meade, is speaking at a workshop on 'Using Rare Barometer results for advocacy' at @eurordisMembership Meeting 2025 in Riga, Latvia today, representing Genetic Alliance UK, sharing insights to strengthen evidence-based advocacy across the rare disease community.

Do you or a loved one have lived experience of inherited conditions or genetic testing? Genomics Partnership Wales (GPW)  are seeking individuals to join their Patient and Public Sounding Board in 2025! Find out more here: genomicspartnership.wales/join-our-sound…

Throughout May, Genetic Alliance UK members EOS Network Eosinophilic Diseases Charity have highlighted Eosinophilic Awareness Month. Learn more➡️eosnetwork.org #EAM2025 #EosinophilicDiseases

THIS WEEK: Diversity in Health Data: Achieving Benefit for All 4 June, 5.30-7.30pm (BST) Free online event exploring what needs to be done to ensure diverse ancestries and backgrounds are represented in genomic data Details at: progress.org.uk/event/diversit… #OurFutureHealth #genetics

Today is the first ever World COL6 Myopathy Day #COL6Day Join in to increase global awareness and understanding of COL6-related myopathies, particularly their impact within the broader context of degenerative neuromuscular conditions. Learn more: ow.ly/yOqT50Vaj6K

We are starting Awareness Day with our key aim to: 👉 Think Hypoglycaemia – know the signs in babies and understand it can be serious and life-threatening. 👉 Think Hyperinsulinism – the leading cause of persistent and severe low blood sugar in infants. #AimHIforHyperinsulinism

📢 Amelia's story is full of the Courage, Hope, and Inspiration that define our HI community. Her voice, and those of the other #HI families we support, shape our work, helping us to tailor our support, inspire research, and strengthen our advocacy. #AimHIforHyperinsulinism