Rare Disease Research UK
@rdrukhub.bsky.social did:plc:5ih4tgwsgf675hqbkleccdmq
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.
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Rare Disease Research UK (@rdrukhub.bsky.social) ist seit 8 Mai 2025 auf Bluesky. Das Konto hat 60 Follower, folgt 33 Konten und hat 46 Posts veröffentlicht.
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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.
Post anzeigenWe'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
Post anzeigenAt 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.
Post anzeigenInclusion 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...
Post anzeigenThe 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]
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