#rarediseaseday — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #rarediseaseday, aggregated by home.social.
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“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”
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#RareDiseaseDay: Carbohydrate Research reports a synthetic heparan sulfate biomarker to improve newborn screening for Sanfilippo syndrome 🧬 Glycans link with lipid metabolism, and lipid pathway disruption is common in rare disease. Better tools enable earlier detection ✅️
Synthesis of the endogenous no... -
It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness
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Heute ist Tag der seltenen Erkrankungen
Rare Disease Day #RareDiseaseDay
#TagDerSeltenenErkrankungen siehe Elke Overhage Blog Unsichtbar, aber lebensgefährlich Warum wir jeden Tag um Verständnis kämpfen #elkeoverhage
https://nrw.social/@elkeoverhage/116051677789950093 -
"Viele Betroffene wechseln mehrfach Arzt und Ärztin, erhalten widersprüchliche Einschätzungen oder nur Verdachtsdiagnosen. Laut Rosenberger berichten außerdem insbesondere Frauen, mit ihren Beschwerden nicht ernst genommen zu werden."
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Today is international #RareDiseaseDay so go find someone rare and give them a hug (consensually, of course). In NZ alone there are more than 300,000 rare people (6% of the population) + their families and carers on top of this. It's much less rare than you think.
You can also give money. It won't surprise you to learn that Rare Disorders NZ's contract with the Ministry Of Health has shrunk in recent years and doesn't cover a fraction of the work they do coordinating research, policy input, operating a support line, connecting support groups, and educating health professionals.
Please consider giving $28 this 28th Feb.
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#RareDiseaseDay: In der EU leben bis zu 36 Mio. Menschen mit einer seltenen Erkrankung. Das Paul-Ehrlich-Institut trägt mit seiner Expertise in Regulation & Forschung dazu bei, dass innovative Therapien sicher entwickelt und zugelassen werden können.
👉 https://www.pei.de/DE/newsroom/hp-meldungen/2026/260227-tag-der-seltenen-erkrankungen.html
#TagDerSeltenenErkrankungen -
28. Februar 2026
Tag der seltenen Erkrankungen -
Erfahre mehr und engagiere dich! -
Selten ist nicht selten: Bis zu 10.000 seltene Erkrankungen sind bekannt. Für Anästhesieteams heißt das oft fehlende Routine und erhöhte Risiken. #OrphanAnesthesia der #DGAI bietet >230 Empfehlungen für mehr Patientensicherheit. #RareDiseaseDay
https://nachrichten.idw-online.de/2026/02/27/tag-der-seltenen-erkrankungen-dgai-datenbank-orphananesthesia-staerkt-weltweit-die-patientensicherheit-bei-narkosen -
Amyloid plaque can build up in body organs other than the brain. The resulting diseases — AL amyloidosis, ATTR amyloidosis and more — cause much suffering. #RareDiseaseDay
https://knowablemagazine.org/content/article/health-disease/2023/seeking-treatments-for-amyloidosis
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Heute ist der Rare Disease Day, und morgen ist die jährliche Veranstaltung von ProRaris hierzu in Luzern. #RareDisease #RareDiseaseDay #rarediseaseday2025 #Luzern #Schweiz
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Heute ist der #RareDiseaseDay, der Tag der Seltenen Erkrankungen, jährlich am 28.02.
Eine davon ist das #GuillainBarreSyndrom - 1 bis 2 Fälle pro 100.000 im Jahr. Daher auch oft länger nicht erkannt.
Selten, bis es Dich trifft. Daher: #Barrierefreiheit geht alle an, früher oder später.
https://www.achse-online.de/de/was_tut_ACHSE/tag_der_seltenen/ -
Genetic conditions like Dravet syndrome, which causes severe childhood epilepsy, are hard to tackle with traditional gene therapy. New approaches in the works include using antisense therapy to boost mRNA splicing. #RareDiseaseDay
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Rare Disease Day 2025 - some thoughts as a vasculitis patient. My annual post about Rare Disease Day, including links to further thoughts from me about related topics. https://vivsacademicblog.wordpress.com/2025/02/28/rare-disease-day-2025-some-thoughts-as-a-vasculitis-patient/ #RareDiseaseDay #health #disability #NHS #medicine #vasculitis
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Der letzte Tag im Februar ist jährlich der Tag der seltenen Erkrankungen (#RareDiseaseDay), ein Aktionstag, der das Bewusstsein für seltene Krankheiten weltweit schärfen soll.
Mehr erfahren 👉 https://www.pei.de/DE/newsroom/hp-meldungen/2025/250228-tag-der-seltenen-erkrankungen.html -
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📯 Just published! The February IHI newsletter at https://europa.eu/!cNp8tC
✅ How our projects are helping to make the #EHDS a reality
✅ Our MACUSTAR project on eye disease received a letter of support from the EMA
✅ AMR project COMBINE trained an #AI model to improve the selection of compounds that can fight multi-drug resistant bacteria
✅ We meet new IHI projects on #RareDiseases, greener drug manufacture & more patient friendly #BloodTests
#RareDiseaseDay #IHITransformingHealth #HorizonEU -
In Deutschland leben etwa 4 Millionen Menschen mit einer seltenen Erkrankung. Ihnen gilt nicht nur heute am #RareDiseaseDay unsere Aufmerksamkeit: Das Berliner Centrum für Seltene Erkrankungen der #CharitéBerlin bietet Betroffenen eine Anlaufstelle. https://www.charite.de/klinikum/themen_klinikum/berliner_centrum_fuer_seltene_erkrankungen_buendelt_expertise
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In Pōneke today to have tea with the Queen* at Government House and to celebrate local heros of rare disorder advocacy. My speech went well, even my te reo held up, and I had some amazing conversations with people who show up for others every day, even when it is hard and seems hopeless.
Humanity won this day my friends, and I fly home tonight tired but restored.
*my old mate the Governor General, Dame Cindy Kiro
Today is international Rare Disease Day. Go hug someone rare.
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😔 Conducting clinical trials in #RareDiseases, particularly ultra-rare diseases, is highly challenging.
💡 New project RealiseD_ihi plans to change this - they're targeting a paradigm shift in #ClinicalTrials for #RareDiseases and will deliver tools and resources to make this happen
Find out more 👉 https://europa.eu/!fQNgR8
#IHITransformingHealth #HorizonEU #RareDiseaseDay -
With #RareDiseaseDay coming up, we're sharing Morgan's story to help raise funding and support for BPAN research.
Learn more & donate: https://beatbpan.org
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Casey posted this on FB yesterday for #RareDiseaseDay - I got on Pete's account and screenshotted it.
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@CFifeKW: Thursday was #RareDiseaseDay…another good reason to donate blood if you can. The need for donors is real in Waterloo Region 🚨 https://t.co/k416PX4Fdc
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Of course, none of this is really about me, it's about the way we support and care (or not) for some of the most vulnerable in our society.
Thursday the 29th of February was International #RareDiseaseDay, but here in NZ we've gone ahead and claimed the entire month of March as #RareDisordersMonth
Rare is everywhere. 300,000 people in NZ alone are affected. More than diabetes, more than the population of Wellington. It's time for rare people to be seen.