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#rarediseaseday
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![Source: @postively_chronic
when your doctor starts to discuss treatment for your rare disease
[pic of Rob Lowe in a wheelchair saying "I think you've got several options. They're all terrible, but you have them."]](https://files.mastodon.social/media_attachments/files/114/083/812/768/448/069/original/66c05abbae5fc375.jpg "Source: @postively_chronic
when your doctor starts to discuss treatment for your rare disease
[pic of Rob Lowe in a wheelchair saying \"I think you've got several options. They're all terrible, but you have them.\"]")
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
Knowable Magazine | Annual ReviewsAmyloidosis: Beyond Alzheimer’s and Parkinson’sAmyloid plaque can build up in body organs other than the brain. The resulting diseases — AL amyloidosis, ATTR amyloidosis and more — cause much suffering.
Heute ist der Rare Disease Day, und morgen ist die jährliche Veranstaltung von ProRaris hierzu in Luzern. #RareDisease #RareDiseaseDay #rarediseaseday2025 #Luzern #Schweiz
GIF
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/
ACHSE e.V.Tag der Seltenen Erkrankungen | ACHSE e.V.Jedes Jahr am letzten Tag im Februar begehen unzählige Menschen auf der ganzen Welt den Tag der Seltenen Erkrankungen.
I'm told that today is #RareDiseaseDay 
IgA Nephropathy is a rare disease, but that still means 60,000 people in the U.S. alone live with it (including me!) #IgANFoundation
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
Knowable Magazine | Annual ReviewsHope for haploinsufficiency diseasesGenetic 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.
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
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
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.
𝗘𝗡𝗦𝗘𝗠𝗕𝗟𝗘 𝗣𝗢𝗨𝗥 𝗟𝗘𝗦 𝗠𝗔𝗟𝗔𝗗𝗜𝗘𝗦 𝗥𝗔𝗥𝗘𝗦 !
Un nouvel Espace Rencontres dédié ouvre à l’Hôpital Nord
Tous les mercredis dès le 5 mars 2025, de 13h à 16h
Hôpital Nord, Marseille
𝗨𝗻 𝗹𝗶𝗲𝘂 𝗱’𝗲́𝗰𝗼𝘂𝘁𝗲 𝗲𝘁 𝗱’𝗼𝗿𝗶𝗲𝗻𝘁𝗮𝘁𝗶𝗼𝗻 𝗽𝗼𝘂𝗿 𝗹𝗲𝘀 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀, 𝗮𝗶𝗱𝗮𝗻𝘁𝘀 𝗲𝘁 𝗽𝗿𝗼𝗳𝗲𝘀𝘀𝗶𝗼𝗻𝗻𝗲𝗹𝘀 𝗱𝗲 𝘀𝗮𝗻𝘁𝗲́.
𝗟𝗮 𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝗼𝗻 𝗲𝘀𝘁 𝗹𝗮 𝗰𝗹𝗲́ 𝗽𝗼𝘂𝗿 𝗺𝗶𝗲𝘂𝘅 𝗱𝗶𝗮𝗴𝗻𝗼𝘀𝘁𝗶𝗾𝘂𝗲𝗿 𝗹𝗲𝘀 𝗺𝗮𝗹𝗮𝗱𝗶𝗲𝘀 𝗿𝗮𝗿𝗲𝘀.
Le 25 février, les étudiants marseillais échangeront avec des experts sur les maladies rares.
Continued thread
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.
Had a good conversation with a good friend in honor of #RareDiseaseDay last night, talking about my medical history and experience. If anyone wants to listen to the replay, you can find it here.
Today's top ten tag trends:
10: #rarediseaseday
9: #thursdayfivelist
8: #thursday
7: #Schaltjahr
6: #Rootstech
5: #throwbackthursday
4: #leapyear
3: #hottakejubilee
2: #LeapDay
1: #criminalasongorpoem
Being the rarest day of the year, today is also #RareDiseaseDay
My son Miles has Hypophosphatasia (HPP) which is a rare genetic disease that leads to under mineralized bones, respiratory compromise, tooth loss, and seizures.
From an extended NICU stay, a trach, numerous surgeries, broken bones 
, over 1000 
and more 
appointments than I can count, it has been an incredible journey.
So in celebration of him and everything that makes him rare, Happy Rare Disease Day!
NEW: Just one faulty gene on chromosome 15 leads to Angelman syndrome, characterized by a happy demeanor and developmental disabilities. A cure is coming, but identifying patients in Hong Kong aand ensuring they can access treatments is hard.
More in our #RareDiseaseDay coverage:
#hongkong #china #science#publichealth #health #medicine #reseach #journalism #news
It’s Rare Disease Day. On its own, each condition affects relatively few people. But together as a large group of people with a rare disease, you probably know someone affected, possibly within your family. #RareDisease #RareDiseaseDay #RareDiseaseDay2024 #29thFebruary #Mastodaoine
Zum #TagderSeltenenErkrankungen möchte ich gern Duchenne-Deutschland (ehemals Benni & Co.) vorstellen. #Muskeldystrophie #Duchenne ist auch so eine Arschlochkrankheit, die man niemandem wünscht.
https://www.duchenne-deutschland.de/
www.duchenne-deutschland.deDeutsche Duchenne Stiftung – ehemals aktion benni & co e. V.