geneticallianceuk.bsky.social

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• LifeArc@lifearc.bsky.social17/03/2026 10:33

  More trials, better data, faster access. We worked with Genetic Alliance UK to develop a new report from the LifeArc Translational Centres for Rare Disease Hub, setting out how smarter policy can accelerate rare disease research. Read more 👉 https://t.ly/LJRi4

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• EMBL-EBI@ebi.embl.org02/03/2026 12:09

  This #RareDiseaseDay, we’re highlighting how open data sharing supports diagnosis, research, and families living with rare conditions. Watch to find out how access to rare disease data through @deciphergenomics.bsky.social can help families better understand their children’s rare conditions.

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• goodmovesjobs.bsky.social@goodmovesjobs.bsky.social17/09/2025 12:04

  Engagement & Support Officer @geneticallianceuk.bsky.social Deliver events & create a supportive community for families in Scotland living with genetic, rare, & undiagnosed conditions. 🕑6-month pilot project - 28hrspw 💵£29,500 pro-rata 📍Scotland (home based) tinyurl.com/5eaxm7hc #engagement

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• LifeArc@lifearc.bsky.social17/09/2025 11:43

  🎉Today marks one year of the LifeArc Translational Centres for Rare Disease. These four Centres are breaking down the barriers in rare disease research and accelerating the development of new tests and treatments. #RareDisease #LifeArcTCRD #OneYearOfImpact

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• Rare Disease Research UK@rdrukhub.bsky.social15/07/2025 15:48

  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

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