uniquecharity.bsky.social
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. http://rarechromo.org
👤 Joined on 28 November 2024
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@uniquecharity.bsky.socialI’ve started sketching out my next painting. #birdart #sketch 🪶
Show PostIncredibly excited to share we're in Philly tonight to fete @firyalrphd.bsky.social who was a 2026 Uplifting Athletes Draft pick supported by Cure VCP Disease Inc. These awards support early career researchers studying rare diseases. Firyal is working developing genetic therapies for VCP disease.
Show PostNew research from @ucsdmedschool.bsky.social is examining whether gene therapy could one day offer a treatment for a rare heart disease linked to sudden cardiac death in young athletes. 🫀 https://bit.ly/3LXXmfk
Show PostSome important new DECIPHER features released by @deciphergenomics.bsky.social today, including a new management/therapies tab, and links to single gene disorder guides from @uniquecharity.bsky.social
Show Post#OliversCampaign Doctors told us that severe meningitis had left Oliver with cerebral palsy and that he would never walk. Oliver looked at that prediction and said, “As if.”
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