#rarediseases — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #rarediseases, aggregated by home.social.
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Shane the Gamer: Belgian Gamer Michiel Vandeweert Dies at 28, Doubling Progeria Life Expectancy. “Belgian content creator and gamer Michiel Vandeweert has died at 28, more than twice as long as doctors expected when he was diagnosed as a child with progeria, the ultra-rare genetic disorder that causes rapid aging.”
https://rbfirehose.com/2026/08/13/shane-the-gamer-belgian-gamer-michiel-vandeweert-dies-at-28-doubling-progeria-life-expectancy/ -
This August, we're launching our #SummerOfScience series again! Stay tuned to hear about our most impactful stories from the past year.
First up is the launch of Screen4Care's tools to help diagnose #RareDiseases earlier and faster.
👶 A TREAT panel for testing newborns genetically for rare diseases using just a few drops of blood from a heel prick
📱 An app to reliably track a patients' symptoms as a diagnostic aide
👉 https://link.europa.eu/GYhXKX
#IHITransformingHealth #HorizonEU #HorizonEurope -
Soligenix advances rare disease innovation using platform science to expand its therapeutic pipeline and address unmet medical needs affecting millions. #RareDiseases #Biotech
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Soligenix reports strong Phase 3 HyBryte data for cutaneous T-cell lymphoma, with response rates exceeding expectations. Interim analysis could accelerate commercialization path. #Biotech #RareDiseases
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Soligenix publishes peer-reviewed HyBryte clinical data demonstrating safety and efficacy for cutaneous T-cell lymphoma treatment. Phase 3 trial interim results expected Q2 2026. #Biotech #RareDiseases
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Soligenix publishes HyBryte clinical data in peer-reviewed journal, highlighting safety and efficacy for cutaneous T-cell lymphoma treatment. Phase 3 interim analysis expected Q2 2026. #Biotech #RareDiseases
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Soligenix's SGX945 receives Promising Innovative Medicine designation from UK MHRA for Behçet's disease, advancing rare disease treatment development. #Biotech #RareDiseases
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Soligenix approaches pivotal 2026 with Phase 3 HyBryte trial for CTCL and SGX945 advancement for Behçet's disease. Multiple clinical catalysts expected. #Biotech #RareDiseases
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Soligenix enters a pivotal 2026 with key clinical milestones ahead, including Phase 3 FLASH2 trial data for HyBryte in CTCL treatment and progress on SGX945 for Behçet's disease. #Biotech #RareDiseases
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Soligenix receives EU orphan drug designation for dusquetide in Behçet Disease, securing 10 years of market exclusivity. Phase 2a data demonstrated efficacy and safety. #Biotech #RareDiseases
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Soligenix receives EU orphan drug designation for dusquetide in Behcet Disease, securing 10 years of market exclusivity. Builds on Phase 2a efficacy data. #Biotech #RareDiseases
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Soligenix advances Phase 3 FLASH2 trial for cutaneous T-cell lymphoma with interim analysis expected Q2 2026. Company also secured orphan drug designation for dusquetide in Behçet's Disease. #Biotech #RareDiseases
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Soligenix's SGX945 earns Promising Innovative Medicine designation in the UK, strengthening its rare disease pipeline. The designation builds on FDA orphan drug recognition for dusquetide. #Biotech #RareDiseases
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Soligenix advances HyBryte clinical credibility with peer-reviewed publication in Expert Opinion on Investigational Drugs, strengthening validation for its cutaneous T-cell lymphoma therapy. #Biotech #RareDiseases
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Soligenix advances Phase 3 CTCL trial with interim analysis expected Q2 2026. Company secures orphan drug designation for dusquetide in Behcet's Disease, strengthening rare disease pipeline. #RareDiseases #Biotech
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Soligenix receives European Commission orphan drug designation for SGX945 in Behçet's disease treatment, validating its rare disease pipeline strategy. #Biotech #RareDiseases
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This is the first step to do the amazing at CSL Plasma. Your help is essential to create life-saving medicines for patients in need. Use my link and we both get rewarded.
https://rewards.cslplasma.com/referral/referral-unique-code/eyJkb25vcklEIjoiMDBFQzNTOSIsImNvZGUiOiI5OU1GN0JNS1ZEIiwicmVnaW9uU2hvcnROYW1lIjoidXMifQ#CSL #Donate #DonatePlasma #PlasmaDonation
#PlasmaDonor #SaveLives #BloodPlasma #GivePlasma #BeAHero
#CommunitySupport #MakeADifference #HelpOthers
#PayItForward #PlasmaTherapy
#MedicalResearch
#ChronicIllnessSupport #Healthcare
#RareDiseases #SideHustle #ExtraCash #PaidToSaveLives -
Wir starten in die letzte Inhalationswoche.
Dank den Frühlingsferien müssen wir wenigstens nicht schon 6 oder 7 Uhr anfangen. Also schaffen wir das doch locker 💪😆
#inhalation #antibiotikum #ataxiateleangiectasia #lungenkrankheit #rarediseases -
The four types of dementia most people don’t know exist
#Dementia #HealthAwareness #BrainHealth #Alzheimers #Neurology #MedicalEducation #PublicHealth #RareDiseases #MentalHealth #Healthcare #Awareness #Science #Caregiving #Aging
https://the-14.com/the-four-types-of-dementia-most-people-dont-know-exist/ -
I’ll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? —> let’s connect!
I’m looking forward to present our work at https://www.findme2care.de AND hear about all the other projects.
Also: I’ll be co-hosting an educational session and roundtable discussion titled „Building Patient Registries under the GDPR – The Good, the Bad and the Ugly“ —> there are a few seats left for conference attendees!
#humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry
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💡 A genuine surprise: The active ingredient in #Viagra, sildenafil, helps treat a rare genetic disorder! This unexpected finding has now been uncovered by researchers at #CharitéBerlin. The drug showed positive effects on the course of the disease in six patients with #Leigh syndrome. More on the promising results:
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Gene therapy revolutionizes medicine by correcting defective genes and treating inherited diseases, cancers, and rare disorders with advanced biotechnology innovations.
#GeneTherapy #Biotechnology #GeneticEngineering #MedicalInnovation #PrecisionMedicine #CancerResearch #RareDiseases #BiotechStudents #LifeSciences #BioResire -
February is Rare Disease Month, with Saturday 28 Feb being Rare Disease Day. To highlight this, Disease Models & Mechanisms is promoting its subject collection on rare disease research.
All articles are Open Access, so free to read and share for everyone: https://journals.biologists.com/dmm/collection/39/Rare-Disease-Translational-Research
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RT by @EU_EESC: 🔴 EESC member @MilenaAngel23 #ReportingFromPlenary
1⃣ @EU_EESC backs European Life Science Strategy >@EUScienceInnov
2⃣ The 🇪🇺 needs a #RareDiseases action plan
3⃣ Research & technology are paramount for health>@EESC_TEN
Click here & find out more 👉https://link.europa.eu/tWWqXg
🔴 EESC member @MilenaAngel23 #ReportingFromPlenary
1⃣ @EU_EESC backs European Life Science Strategy @EUScienceInnov
2⃣ The 🇪🇺 needs a #RareDiseases actio...
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https://nitter.net/EESC_PRESS/status/2024166292203171849#m -
We need to do more for patients & their families!
We call for:
🧬holistic approach to #RareDiseases;
🧬stronger EU coordination in research & infrastructure;
🧬patients organisations and #EUCivilSociety involvement & participation in governance.Opinion: http://link.europa.eu/tWWqXg
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https://nitter.net/EU_EESC/status/2024156787927118024#m