Rare Disease Research UK
rdrukhub.bsky.social
We hope to be able to significantly impact the RD research landscape and improve the lives of those directly or indirectly affected by rare diseases.
👤 Joined on 08 May 2025
58
Followers
33
Following
43
Total Posts
📜 Kullanıcı Geçmişi
- 08 May 2025, 14:56
🎉 Bluesky'e katıldı - İlk kullanıcı adı:
@rdrukhub.bsky.social
🚫 Blokladığı Kullanıcılar
❤️ Beğendiği Gönderiler
It's a valuable resource showcasing the organisations, programmes and networks driving collaboration across the rare disease community in the UK. We're proud to be part of this initiative as we work towards delivering new treatments for people living with rare diseases worldwide.
Show PostWe're delighted to be included on Raremap, a new guide to the UK's rare disease research ecosystem developed by @lifearc.bsky.social and @rdrukhub.bsky.social. Explore: 🔗 : buff.ly/yQx6pYT #RareDiseases #RareDiseaseResearch
Show PostAt the @rdrukhub.bsky.social 3rd Annual Conference, the theme “The Power of Collaboration,” emphasised how partnerships between organisations - @lifearc.bsky.social, @geneticallianceuk.bsky.social, patients and carers, can build a stronger rare disease ecosystem for #RareDisease drug development.
Show Post
Inclusion by Design shares practical recommendations to tackle structural and cultural barriers to #PPIE in academic research, with input from @rdrukhub.bsky.social and @lifearc.bsky.social Translational Centres for #RareDisease Research. Read the report here: geneticalliance.org.uk/wp-content/u...
Show Post
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 dystoniaimpact@qmul.ac.uk
Show Post