B.C. Government Allocates $400,000 for Overseas Treatment of Boy with Rare Disease
🤖 IA: It's not clickbait ✅
👥 Users: It's not clickbait ✅
#healthcare #raredisease #funding
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@killbaitcanada.bsky.social
@killbaitcanada.bsky.socialB.C. Government Allocates $400,000 for Overseas Treatment of Boy with Rare Disease
🤖 IA: It's not clickbait ✅
👥 Users: It's not clickbait ✅
#healthcare #raredisease #funding
👇👇👇
@thezebraalliance.bsky.socialHow would you explain the effort it takes to stay stable so that people might understand?
linktr.ee/thezebraalliance #hypermobility #EDS #hEDS #HSD #ehlersdanlossyndrome #hypermobilityspectrumdisorder #connectivetissue #raredisease
@thezebraalliance.bsky.socialThe Zebra Alliance is here you 🩵🫂🩵
linktr.ee/thezebraalliance #chronicillness #chronicpain #disability #dynamicdisability #invisibleillness #raredisease #EDS #ehlersdanlossyndrome #mentalhealth
@angioedemanews.bsky.socialStay in the know—and never miss an update! https://bit.ly/3FHecMk
Sign up for the weekly newsletter, because knowledge is power, and you’re not alone!
#Angioedema #HAE #PatientSupport #Newsletter #RareDisease #AngioedemaNews #Bionews
@angioedemanews.bsky.socialYour mental health matters: https://bit.ly/4jEt387
Self-care, mindfulness, support groups, and therapy can all help you cope 💙
#HereditaryAngioedema #HAEAwareness #MentalHealthMatters #ChronicIllness #RareDisease #PatientSupport #AngioedemaNewsToday #Bionews
@franmartinezgr.bsky.social5q31 duplications encompassing PURA are associated with a neurodevelopmental disorder #RareDisease #Genetics #NewPhenotype #NewMOI www.nature.com/articles/s41...
@bcmgenetics.bsky.socialDon't forget! Our next Evenings with Genetics webinar is less than a week away. We hope you will join us next Tuesday, Sept. 29 at 7 p.m. to learn more about the Undiagnosed Disease Network. Sign up today: bit.ly/3RKROb0
#undiagnoseddisease #raredisease
@asgct.bsky.socialJoin the 2026 NORD Breakthrough Summit, Oct. 25–27 in Washington, D.C.! ASGCT staff will be there to connect you with patient education resources and discuss the latest policies affecting rare disease research and individuals. Learn more ➡️ nordsummit.org
@mgnews.bsky.socialExplore the details: https://bit.ly/4At9itF
A targeted cell therapy aimed at immune cells producing antibodies that drive myasthenia gravis showed promise in lab and mouse models.
#MyastheniaGravis #RareDisease #MG #MyastheniaGravisNews #Bionews
@giodang.bsky.socialBeyond basic biology, many neurological diseases turn out to be lipid diseases: rare ones that start from a single failing enzyme or transporter, and common ones. #neurodegeneration #RareDisease #lysosomaldisease
@mgnews.bsky.socialUnpredictable is the only predictable part. #RareDisease
@adityabasu.bsky.socialFDA clears UX111: The 1st systemic AAV9 gene therapy for pediatric Sanfilippo syndrome Type A (MPS IIIA)! Crossing the blood-brain barrier via IV infusion, it cuts CSF heparan sulfate >65% and stabilizes cognition.
Read full feature: url.nextechie.in/2nADch
@rarectadvocate.comHypoplastic Left Heart Syndrome (HLHS): a rare congenital heart defect where the left side of the heart is underdeveloped. Often found on prenatal ultrasound; treated with staged surgeries.
Learn more: littlehearts.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
@oxfordharrington.bsky.socialProgress in rare disease starts with people coming together.
We're delighted to welcome the rare disease community to the Oxford-Harrington Rare Disease Centre Symposium 2026 for two days of collaboration, shared learning and new ideas.
@hdreach.bsky.socialRDU: See y'all at the Boot Room tonight!
Check HEYLO for updates on all of our meetups! www.hdreach.org/community/ev... 💙💜 #HDreach #ReachForHope #raredisease #huntingtonsdisease
@gamuts.netNeurenteric cyst: Imaging findings https://gamuts.net/x/28865 #radiology #RareDisease #FOAMed
@erneurogen.bsky.social🔎 Could ultrasound reduce the need for radiation when monitoring bowel management? Join our webinar on clinician USS in children with colorectal conditions.
📅 23 Sept | 18:00–19:00 CEST
@oxfordharrington.bsky.socialHope, determination and collaboration.
Our new video featuring Genie and her family, alongside Dr Joseph Buxbaum's work in ADNP syndrome, highlights what can happen when families, researchers and clinicians come together to drive progress.
@alsnewstoday.bsky.socialSome connections leave a mark that time can’t undo.
#RareDisease
@angioedemanews.bsky.socialTake a closer look: https://bit.ly/46I2cnF
Columnist Natalie Sirota recently had the pleasure of meeting Friedreich's ataxia columnist Matt Lafleur, a key part of the Bionews family.