![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://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:dbzmdmsaz6lkhb4tv3culzme/bafkreigxjh6fwc6bda32innbskci33z3z2qh4i7yo7dqo3cceev6g6ob7m)
February 28, 2025 at 10:11 PM
Today is #RareDiseaseDay
Through EB Research Partnership, families, scientists, and supporters are pushing research forward, pioneering progress in EB and helping reshape what’s possible for rare diseases.
It’s not a matter of if.
It’s a matter of time.
🦋 Learn more: ebresearch.org
Through EB Research Partnership, families, scientists, and supporters are pushing research forward, pioneering progress in EB and helping reshape what’s possible for rare diseases.
It’s not a matter of if.
It’s a matter of time.
🦋 Learn more: ebresearch.org
February 28, 2026 at 5:00 PM
Today is #RareDiseaseDay
Through EB Research Partnership, families, scientists, and supporters are pushing research forward, pioneering progress in EB and helping reshape what’s possible for rare diseases.
It’s not a matter of if.
It’s a matter of time.
🦋 Learn more: ebresearch.org
Through EB Research Partnership, families, scientists, and supporters are pushing research forward, pioneering progress in EB and helping reshape what’s possible for rare diseases.
It’s not a matter of if.
It’s a matter of time.
🦋 Learn more: ebresearch.org
Tänään on Harvinaisten sairauksien päivä. Näkyvyystempaus eduskuntatalon edessä klo 12.30.
#harvinaistenSairauksienPaiva
#RareDiseaseDay
#harvinaistenSairauksienPaiva
#RareDiseaseDay
February 28, 2025 at 4:19 AM
Tänään on Harvinaisten sairauksien päivä. Näkyvyystempaus eduskuntatalon edessä klo 12.30.
#harvinaistenSairauksienPaiva
#RareDiseaseDay
#harvinaistenSairauksienPaiva
#RareDiseaseDay
Heute wieder
#rarediseaseday
#rarediseaseday
1/2
Heute ist #rarediseaseday, Tag der seltenen Erkrankungen.
Meine Rare disease bedeutet für mich:
-Mich jedes Mal neu erklären müssen, auch ggü. medizinischem Fachpersonal
-Für manche Symptome keinen Nachweis haben, weil nicht untersucht
-Keine andere betroffene Person zu kennen
-Vieles selbst...
Heute ist #rarediseaseday, Tag der seltenen Erkrankungen.
Meine Rare disease bedeutet für mich:
-Mich jedes Mal neu erklären müssen, auch ggü. medizinischem Fachpersonal
-Für manche Symptome keinen Nachweis haben, weil nicht untersucht
-Keine andere betroffene Person zu kennen
-Vieles selbst...
February 28, 2025 at 7:45 PM
Heute wieder
#rarediseaseday
#rarediseaseday
Tomorrow is #RareDiseaseDay. An exciting discovery today for COPA syndrome, a rare heritable autoimmune disease. Finding a protective allele that has the potential to lead to a cure
rupress.org/jem/article/...
rupress.org/jem/article/...
February 27, 2025 at 7:27 PM
Tomorrow is #RareDiseaseDay. An exciting discovery today for COPA syndrome, a rare heritable autoimmune disease. Finding a protective allele that has the potential to lead to a cure
rupress.org/jem/article/...
rupress.org/jem/article/...
Auf Anregung meines Kollegen Erich Irlstorfer bin ich heute zwischen zwei Terminen eine Runde gejoggt. Denn der 29. Februar in Schaltjahren ist #RareDiseaseDay. Menschen mit seltenen Krankheiten brauchen gute medizinische und pflegerische Versorgung.
February 29, 2024 at 5:41 PM
Auf Anregung meines Kollegen Erich Irlstorfer bin ich heute zwischen zwei Terminen eine Runde gejoggt. Denn der 29. Februar in Schaltjahren ist #RareDiseaseDay. Menschen mit seltenen Krankheiten brauchen gute medizinische und pflegerische Versorgung.
Thinking of all those living with rare diseases on #RareDiseaseDay 🌈🦓#FunEarringFriday #mpnsm
February 28, 2025 at 12:52 PM
Thinking of all those living with rare diseases on #RareDiseaseDay 🌈🦓#FunEarringFriday #mpnsm
TalkAboutIt.org and click on PODCASTS #RareDiseaseDay
March 3, 2026 at 6:23 AM
TalkAboutIt.org and click on PODCASTS #RareDiseaseDay
My husband bought me pretty cool custom made cereballerina mugs.
Studying the cerebellum so hopefully one day everyone can dance 🩰
#rarediseaseday
Studying the cerebellum so hopefully one day everyone can dance 🩰
#rarediseaseday
March 1, 2026 at 12:34 AM
My husband bought me pretty cool custom made cereballerina mugs.
Studying the cerebellum so hopefully one day everyone can dance 🩰
#rarediseaseday
Studying the cerebellum so hopefully one day everyone can dance 🩰
#rarediseaseday
Today is rare disease day! I made this infographic about my condition a while ago, but I wanted to share again today to help raise awareness 💙 #rarediseaseday #igan
March 1, 2026 at 12:03 AM
Today is rare disease day! I made this infographic about my condition a while ago, but I wanted to share again today to help raise awareness 💙 #rarediseaseday #igan
March 1, 2025 at 12:11 AM
Why do I fight? It’s been a fight from Day 1 almost 23 years ago.
#RareDiseaseDay #TuberousSclerosisComplex
#RareDiseaseDay #TuberousSclerosisComplex
February 28, 2026 at 6:20 AM
Why do I fight? It’s been a fight from Day 1 almost 23 years ago.
#RareDiseaseDay #TuberousSclerosisComplex
#RareDiseaseDay #TuberousSclerosisComplex
Zum #TagDerSeltenenErkrankungen/#RareDiseaseDay nehme ich euch mal mit in den Alltag mit #EhlersDanlosSyndrom.
Was muss ich durch #EDS beachten?
Welche Abläufe sind anders/kommen durch die Erkrankung und eventuelle Komorbiditäten hinzu...?
...
Habt ihr Fragen, gerne nachfragen 😊
Was muss ich durch #EDS beachten?
Welche Abläufe sind anders/kommen durch die Erkrankung und eventuelle Komorbiditäten hinzu...?
...
Habt ihr Fragen, gerne nachfragen 😊
February 29, 2024 at 12:00 PM
Zum #TagDerSeltenenErkrankungen/#RareDiseaseDay nehme ich euch mal mit in den Alltag mit #EhlersDanlosSyndrom.
Was muss ich durch #EDS beachten?
Welche Abläufe sind anders/kommen durch die Erkrankung und eventuelle Komorbiditäten hinzu...?
...
Habt ihr Fragen, gerne nachfragen 😊
Was muss ich durch #EDS beachten?
Welche Abläufe sind anders/kommen durch die Erkrankung und eventuelle Komorbiditäten hinzu...?
...
Habt ihr Fragen, gerne nachfragen 😊
It’s #rarediseaseday I have 3 rare diseases. 💜
🌍 It’s #RareDiseaseDay 2026! 💜
Today we stand with the 300 million people living with a rare disease. Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.
👉 Read more: https://go.rarediseaseday.org/NEWS
Today we stand with the 300 million people living with a rare disease. Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.
👉 Read more: https://go.rarediseaseday.org/NEWS
March 1, 2026 at 2:47 AM
It’s #rarediseaseday I have 3 rare diseases. 💜
Actually, not so rare at all!
#RareDiseaseDay
Affecting a substantial part of human kind!
Support research on rare diseases!
Picture from rarediseaseday.org
#RareDiseaseDay
Affecting a substantial part of human kind!
Support research on rare diseases!
Picture from rarediseaseday.org
February 28, 2025 at 7:27 PM
Actually, not so rare at all!
#RareDiseaseDay
Affecting a substantial part of human kind!
Support research on rare diseases!
Picture from rarediseaseday.org
#RareDiseaseDay
Affecting a substantial part of human kind!
Support research on rare diseases!
Picture from rarediseaseday.org
Bis zum So, 3.3., kann man am virtuellen Spendenlauf zugunsten der Erforschung seltener Krankheiten teilnehmen. Wie stets gilt: Auch kleine Beträge helfen! #rarediseaseday #nevernotrunning
Heute ist Tag der seltenen Erkrankungen. Anlässlich dessen habe ich am #rarediseaserun teilgenommen, damit auch für diese Erkrankungen noch besser geforscht und dazu aufgeklärt werden kann. Hier noch mehr Infos zum Lauf: laufenmachtgluecklich.de/laeufe/2024/...
#rarediseaseday
#rarediseaseday
March 1, 2024 at 6:56 AM
Bis zum So, 3.3., kann man am virtuellen Spendenlauf zugunsten der Erforschung seltener Krankheiten teilnehmen. Wie stets gilt: Auch kleine Beträge helfen! #rarediseaseday #nevernotrunning
February 28, 2026 at 1:31 PM
Heute ist Tag der seltenen Erkrankungen. Ich kann jedem nur raten: Wenn ihr merkt, dass etwas mit eurem Körper nicht stimmt, dann besteht auf ordentlicher Abklärung. Lasst euch nicht abwimmeln! Ja, oft ist die harmlose Erklärung die richtige, aber eben nicht immer.
#rarediseaseday
#rarediseaseday
February 29, 2024 at 1:01 PM
Heute ist Tag der seltenen Erkrankungen. Ich kann jedem nur raten: Wenn ihr merkt, dass etwas mit eurem Körper nicht stimmt, dann besteht auf ordentlicher Abklärung. Lasst euch nicht abwimmeln! Ja, oft ist die harmlose Erklärung die richtige, aber eben nicht immer.
#rarediseaseday
#rarediseaseday
Nochmal der richtig Hashtag: #RareDiseaseDay
February 29, 2024 at 2:45 PM
Nochmal der richtig Hashtag: #RareDiseaseDay
I’ve suffered from a rare disease that’s changed and challenged my life in ways I’d never wish on anyone, but I’ve learned more about myself and how to live life with grace. I’m still fighting and the only thing that keeps me going is hope. On the darkest of days it’s been my anchor. #rarediseaseday
Today is Rare Disease Day, and a great reminder of the importance of NIH and science funding in driving hope 🧬⬇️
www.rarediseaseday.org
www.rarediseaseday.org
Rare Disease Day 2025 – Raising awareness for people living with rare diseases and their families worldwide.
www.rarediseaseday.org
March 1, 2025 at 4:20 AM
I’ve suffered from a rare disease that’s changed and challenged my life in ways I’d never wish on anyone, but I’ve learned more about myself and how to live life with grace. I’m still fighting and the only thing that keeps me going is hope. On the darkest of days it’s been my anchor. #rarediseaseday
Tomorrow is the International Rare Disease Day. The billionaires have stolen even that from USAmericans.
#RareDiseaseDay
#RareDiseaseDay
As a rare disease patient, I made great friends through patient support groups. We were so excited to meet at the annual FDA-NIH Rare Disease Day tomorrow. But it’s cancelled.
udnf.org/udnf-stateme...
udnf.org/udnf-stateme...
Statement on Rare Disease Day, Research and Funding - UDNF
UDNF Statement on Rare Disease Day 2025 Cancellation, Research Funding, and Policy Impacts on the Ultra-Rare and Undiagnosed Community
udnf.org
February 27, 2025 at 9:14 PM
Tomorrow is the International Rare Disease Day. The billionaires have stolen even that from USAmericans.
#RareDiseaseDay
#RareDiseaseDay
While myalgic encephalomyelitis (ME/CFS) is not a rare disease by the numbers, some of us have a co-morbidity that is a rare disease & we want to support our fellow disease/ disability community. A disease is rare when it affects fewer than 1 in 2000 people.
#RareDiseaseDay
#RareDiseaseDay
February 28, 2025 at 6:39 PM
While myalgic encephalomyelitis (ME/CFS) is not a rare disease by the numbers, some of us have a co-morbidity that is a rare disease & we want to support our fellow disease/ disability community. A disease is rare when it affects fewer than 1 in 2000 people.
#RareDiseaseDay
#RareDiseaseDay