📣 We’re getting ready to host our 3rd Annual Conference next year and this time, we’re heading to Birmingham! 📅 16 April 2026 📍 The Birmingham Conference & Events Centre, B5 4EW 💯 Save the date and keep an eye out for more updates!

⏳ Submit your applications soon — just a few days left to apply for the Early Career Researcher Award in PPIE! 📢 Help spread the word by sharing this opportunity with your networks. Find out more and apply 👉 rd-research.org.uk/uncategorize... Deadline: 16 Nov

📣 Only a short time left to apply for the ECR Award in PPIE — an opportunity to highlight early career researchers who are shaping how patients and the public are involved in research. Find out more & apply 👉 rd-research.org.uk/uncategorize... Application deadline: 16 Nov 2025

🏅 There’s less than a month left to apply for the ECR Award in PPIE — a great opportunity to recognise and celebrate early career researchers who are making real impact through patient and public involvement and engagement. 📣 Don’t miss out. Spread the word and share this with your networks!

🌟Our Co-Lead, Victoria Hedley features in the latest Open Access Government issue with an article on advancing rare disease care and cross-border collaboration in research. 🚀Find it in the rare disease section (p.160). tinyurl.com/msue2nwc

✨ Thanks to everyone who took the time to respond to our UK Regulatory Access Survey. We’ve had a great response and the team is now busy analysing the results. 📝 We’re looking forward to sharing the insights soon — watch this space for updates.

@geneticallianceuk.bsky.social has drafted recommendations to tackle structural & cultural barriers to PPIE in rare disease research. We need your feedback! 📝UK-based researchers, PPIE members & rare disease advocates, read the recommendations & complete the survey here 👉 tinyurl.com/PPIEChange

⏰ Reminder: Applications for the Early Career Researcher Award in PPIE close on 16 November 2025. 🧬 If you know someone doing great work, encourage them to apply and help spread the word through your networks!

The Dystonia IMPACT team are recruiting children & young people with dystonia & their parents to take part in interviews to find out what matters most to them. Register your interest: tinyurl.com/DystoniaIMPACT Or contact the team at [email protected]

👉 Have you had a chance to fill out our survey yet? If not, we’d love your input. Please take a few minutes to complete it and don’t forget to share it with your rare disease networks! 📝tinyurl.com/RDRLDproject 🔴 Deadline: 12 September

👉 If you know an early career researcher in rare disease who’s championing meaningful involvement and engagement, encourage them to apply with their PPIE partner! Deadline: 16 Nov 2025

🧩 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

🏆The Early Career Researcher Award in PPIE is back for year two! 🤝Do you know a young researcher who is or has meaningfully and effectively involved your community in their research? Share this opportunity with your networks! Find out more & apply tinyurl.com/ECRaward25

🙏Thank you for all the responses so far! 🟢Deadline extended to 20 August as we are particularly keen to hear from across all four nations of the UK so we can build a truly representative understanding of the challenges and needs across different regions. 🖊️Take the survey tinyurl.com/r-dsurvey

🟢 Deadline extended to 15 August! 🖊️ If you haven’t had a chance to share your experience with UK regulatory pathways in rare disease research, there’s still time! Your insights can help drive change. 📝Take the survey tinyurl.com/r-dsurvey

The RDRUK ELSI Node hosted their first conference earlier this year, bringing together patients, families, researchers, and healthcare professionals in rare disease. 👇Check out their article capturing the voices and priorities shared on the day.

The recent report published by LifeArc and @geneticallianceuk.bsky.social gives several recommendations on how we can #ChangeTheRareFuture and get treatments to people with rare conditions faster. Read it here: t.ly/Ka7qn

Congratulations to Dr Ella Whittle & the UPNAT node for winning the Best Poster Award at the @genomicsengland.bsky.social Research Summit 2025!🎉 👉Take a closer look at their work and poster tinyurl.com/UPNAT

📢 Are you involved in rare disease research in the UK? We want to hear from you! 🔎 Share your experiences with regulatory and market access pathways for rare disease — the good, the bad, and the changes that you would like to see! 📝Take the survey tinyurl.com/r-dsurvey

🚀Check out this recent publication from the mTOR Pathway Diseases node - Challenges and opportunities from bench to bedside and the mTOR node tinyurl.com/mTORnode