With the UK Rare Diseases Framework ending in January 2027, the report sets out a new vision for rare conditions policy. Read the Future for Rare report published by @GeneticAll_UK 👇 🔗 geneticalliance.org.uk/wp-co…

Good research is shaped by the people it is for. If you have worked with public partners to make your rare disease research better, we'd love to hear about it! Find more info 👇

📢 Applications are now open for this year’s ECR Award in PPIE! Open to UK-based PhD students and post-docs working in rare disease research, applying with a key PPIE contributor. 📅 Deadline: 15 November 2026 👉 rd-research.org.uk/uncategor… #RareDisease #PPIE #ECR

Are you searching for support, information or connections in the rare disease community? Raremap helps you find charities, patient organisations and more: raremap.co.uk/

We need your help to build a resource that reflects the full scope of work happening across rare diseases in the UK. If your organisation isn't on Raremap yet, request to be added now: raremap.co.uk/join/

Looking for collaboration, funding and support opportunities for your rare disease research? Explore Raremap to find the connections you need: raremap.co.uk

Is your organisation on Raremap yet? Join the living resource that makes the UK rare disease landscape easier to navigate. Visit Raremap now and request to be added: raremap.co.uk/join/

The rare disease landscape can be complex to navigate – that's why we've collaborated with @lifearc1 to launch Raremap. It's a searchable directory of rare disease organisations so you can find out who does what and how to connect. Visit Raremap now: tinyurl.com/3atbumrt

Less than 5% of rare diseases have an approved treatment. The @MHRAgovuk wants to change that, and they want to hear from you. Take part in the Rare Disease Therapies Regulatory Framework consultation before 30/07/26. 👉 tinyurl.com/4t89v5mc

🎉 Our 3rd Annual RDRUK Conference brought researchers, clinicians, patients and policymakers together under one theme: the Power of Collaboration. Big thanks to our speakers, nodes, exhibitors and the CAPTIVATE node! 🙌

Congrats to Katarina Gunter on winning the Early Career Rare Disease Research Award 2026! 🏆 Shout out to runners-up Karen Low and Riona Fumi! 🙌The standard of work this year was a real testament to the talent and dedication of ECRs in the rare disease space!

Huge congrats to Laura Cristescu & Chris McQuade, winners of the ECR in PPIE 2025-26! 🏆 Shout out to our runners-up and highly commended teams too! In rare disease research, PPIE isn't optional - it's everything. ❤️ Check out the blogs from them tinyurl.com/5n6tpmtt

What does good practice in rare disease PPIE really look like in action? Join us for a conference session on 'Good Practice in Rare Disease PPIE' Register for our annual conference if you haven’t already! tinyurl.com/RDRUKCon26

Don't miss out on the rare disease landscape updates and discussion on how regulatory and policy frameworks shape the journey of rare disease treatments to patients. Register for our annual conference if you haven’t already! tinyurl.com/RDRUKCon26

What does the current rare disease landscape in the UK look like, and where is it heading? Join us for a day of insight and open discussion on the rare disease research landscape and much more! Register for our annual conference if you haven’t already! tinyurl.com/RDRUKCon26

What’s next for rare disease research, and how do we turn promising ideas into real impact for patients? Join us at our annual conference to hear from rare disease researchers, join the conversation, and connect with fellow advocates! Register now tinyurl.com/RDRUKCon26

This #RareDiseaseDay we stand with people living with rare conditions in the UK and beyond, with their families, the people still searching for answers, and everyone who has lost someone along the way. 💜