Unique

Unique

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

86

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25

Following

297

Total Posts

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  • 28 Kas 2024, 11:36
    🎉 Bluesky'e katıldı - İlk kullanıcı adı: @uniquecharity.bsky.social

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❤️ Beğendiği Gönderiler

I’ve started sketching out my next painting. #birdart #sketch 🪶

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DMartin
05 February 2026 14:27

Incredibly 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.

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New 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

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Some 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

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#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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