Ob #Neurologie, #Immunologie, #Onkologie und darüber hinaus – für mehrere #OrphanDrugs ist 2024 eine Zulassung geplant und eine Markteinführung möglich.
Mehr Informationen hier:
www.vfa.de/de/presse/pr...
#ForschungIstDieBesteMedizin #RareDiseaseDay #TagDerSeltenenErkrankungen #ColourUp4Rare
Mehr Informationen hier:
www.vfa.de/de/presse/pr...
#ForschungIstDieBesteMedizin #RareDiseaseDay #TagDerSeltenenErkrankungen #ColourUp4Rare
February 29, 2024 at 4:09 PM
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Rare diseases can impact anyone, anywhere. Our disorders may differ from one another, but we share the experience of being on a rare journey. We understand one another. This #RareDiseaseDay, get to know us: rarediseases.org/rare-disease...
February 28, 2025 at 7:13 PM
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#lavoixdesrares
Faites entendre la voix des patients
JOURNEE INTERNATIONALE DES MALADIES RARES
#jesuisrare
#jinmr
#RareDiseaseDay #sarcoïdose
Faites entendre la voix des patients
JOURNEE INTERNATIONALE DES MALADIES RARES
#jesuisrare
#jinmr
#RareDiseaseDay #sarcoïdose
February 28, 2025 at 4:03 PM
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Today is Rare Disease Day- Cal was diagnosed with BPAN in 2020. It’s an absolute shit of a disease with an awful prognosis. If you’re not spending your time living your best life get yourself sorted.Some people don’t have the luxury of time #bpan #nbiadisorders #rarediseaseday #rarediseaseawareness
February 28, 2025 at 6:56 AM
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1 in 12 Pennsylvanians are living with a rare disease. As a member of the General Assembly's Rare Disease Caucus, I'm proud to advocate for those battling a rare disease, ensuring no patient gets left behind. #RareDiseaseDay
Learn more at: pardac.org.
Learn more at: pardac.org.
Home - PA Rare Disease Advisory Council
OUR MISSION Improving lives for Pennsylvanians who live with a rare disease The PA Rare Disease Advisory Council is a resource for patients, physicians, and families to help those living with a rare…
pardac.org
February 28, 2025 at 9:00 PM
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Nicola Whitehill, our volunteer ambassador, has written a poem which has been showcased at Genetic Alliance UK's parliamentary reception to mark Rare Disease Day about her experience with scleroderma.
👉Read more: royalfreecharity.org/stories/volu...
#RareDiseaseDay #RareDiseaseDay2025 #Scleroderma
👉Read more: royalfreecharity.org/stories/volu...
#RareDiseaseDay #RareDiseaseDay2025 #Scleroderma
Volunteer ambassador showcases scleroderma poem at parliamentary…
royalfreecharity.org
February 28, 2025 at 4:16 PM
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As an industry leader in the MPN community, we are proud to support #RareDiseaseDay and show our stripes for the several thousands of people who have been diagnosed with an MPN. #ShowYourStripes
February 28, 2025 at 5:15 PM
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Schnell noch anmelden und heute mitmachen beim #RareDiseasesRun.
Ein virtueller, inklusiver Lauf zur Unterstützung von 33 Organisationen für #SelteneErkrankungen.
Www.rarediseasesrun.net
#RareDiseaseDay
#RunForRare
Ein virtueller, inklusiver Lauf zur Unterstützung von 33 Organisationen für #SelteneErkrankungen.
Www.rarediseasesrun.net
#RareDiseaseDay
#RunForRare
March 2, 2025 at 10:35 AM
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Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: bit.ly/4g6TEJa
#ShowYourStripes #RareDisease
#ShowYourStripes #RareDisease
February 5, 2025 at 8:19 PM
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From AWIS Magazine, Behnaz Akbari, president of the Purdue University Chapter of NORD Students for Rare, explores the challenges of developing drugs and medical devices to prevent, diagnose, and treat rare diseases. buff.ly/3EUmO1n #WomenInScience #RareDiseaseDay
February 28, 2025 at 5:00 PM
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Honouring #RareDiseaseDay: Faces of Strength & Advocacy 💜
Let's recognize the parents fighting not just for answers, but for research that can change lives.
In the coming weeks, we’ll be sharing their journeys—putting faces to the fight for awareness + action.
#RareToAware
Let's recognize the parents fighting not just for answers, but for research that can change lives.
In the coming weeks, we’ll be sharing their journeys—putting faces to the fight for awareness + action.
#RareToAware
February 28, 2025 at 8:31 PM
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Did you see the Word of Life mural lit up in a rainbow of colors this week? It's striped with blue, green, pink, and purple in honor of #RareDiseaseDay.
#LightUpForRare
#LightUpForRare
February 28, 2025 at 3:03 PM
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おはようございます。今日もよろしくお願いします。2月末が世界希少・難治性疾患の日となっていることは重要ですね。この日を通じて、その理解と支援が広まることを願っています。 #RareDiseaseDay
February 29, 2024 at 12:49 AM
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This #RareDiseaseDay we are highlighting fibrolamellar hepatocellular carcinoma (FLC), a rare liver cancer. In Sanford Simon's lab, patients and scientists work side by side to investigate FLC.
Learn more here: seek.rockefeller.edu/lab-partners/
Learn more here: seek.rockefeller.edu/lab-partners/
Seek - Lab Partners
Mahsa Shirani (left), a postdoc, with Skye Ryan, a fibrolamellar hepatocellular carcinoma (FLC) patient who joined the Simon lab in 2024 and is currently working on a project utilizing CRISPR-Cas9 to ...
seek.rockefeller.edu
February 28, 2025 at 6:11 PM
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Today is #RareDiseaseDay 🌍🎗️
We stand in solidarity with the global community to raise awareness for those affected by rare diseases, including #appendixcancer and PMP.
Learn more: acpmp.org/event/rare-d...
#ShowYourStripes
We stand in solidarity with the global community to raise awareness for those affected by rare diseases, including #appendixcancer and PMP.
Learn more: acpmp.org/event/rare-d...
#ShowYourStripes
Rare Disease Day 2025 - Appendix Cancer PMP
Friday, February 28, 2025 will once again mark Rare Disease Day, a global campaign celebrated on the last day of February each year (the rarest day on the calendar) to raise awareness about the more t...
acpmp.org
February 28, 2025 at 6:43 PM
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#JackQuaid plays an action hero with a #RareDisease in the new #NovocaineMovie, so @paramountpics.bsky.social
partnered with NORD to match your donations up to $40,000! We're even hosting a special event & screening in #AustinTX.
Learn more & donate: bit.ly/4185vTd
#RareDiseaseDay
partnered with NORD to match your donations up to $40,000! We're even hosting a special event & screening in #AustinTX.
Learn more & donate: bit.ly/4185vTd
#RareDiseaseDay
February 10, 2025 at 2:31 PM
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Lots happening in the #RareDiseaseDay community in the US in spite of gvt pulling the meeting out from under it. Gvt is in chaos here and people are working around it... without it. Community has never been more important than today!
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...
February 28, 2025 at 3:26 PM
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🚨 There are over 300 million people who live with a #RareDisease in #Europe.
🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.
🙌Join us & show your support for #RareDiseaseDay
#ShowYourColours
🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.
🙌Join us & show your support for #RareDiseaseDay
#ShowYourColours
February 28, 2025 at 9:47 AM
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Bluesky's Top 10 Trending Words from the Past 10 Minutes:
️⚠️💨8 - ukraine 🔓
️⚠️💨3 - 1﹐350
️⚠️💨2 - 帝劇
️⚠️💨2 - gaza 🔓
️⚠️💨2 - blackout
️⚠️💨1 - skype
️⚠️💨1 - 晒そ
️⚠️💨1 - ramadan
️⚠️💨1 - 帝国
(tap to see all posts w/ the word! ANDROID: long-press©)
#йобанарусня 🇺🇦
![Emoji Legend
⚠️💨# | "Trend Strength Rating" (deprecated; soon to be replaced by 💨x#, see below)
🔓 | "Unlocked" Ongoing Emergency Word (such words are not weighted down by their own previous usage; their *ongoing* increased usage--weeks, months, years--would otherwise move them down the list.)
[NOT YET IMPLEMENTED]
💨x# | "Increased Trending Rate" for a Word (meaningful value; "💨x8 - burger" will mean "burger" is trending at 8 times its own normal rate for this time of day)
[PREVIOUSLY USED]
⚠️🌀💨 | "Trend Strength Rating" (see above)
⚠️🌀 CAT. # | [same; "CAT." = Category, like hurricane]
💬# | 10min Post Count
🆎# | 10min Word Count
🙂# | 10min Emoji Count](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:mcb6n67plnrlx4lg35natk2b/bafkreie7hcpfsp3oy2uxrgxlboio7fcnugzae22d6k2dow6tdwqkdtgexi@jpeg)
February 28, 2025 at 2:00 PM
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Join us on 19 February for a meeting of the MEP Interest Group on Brain Health & Neurological Conditions, 'Shaping the Future: Policy Responses to Rare Neurological Challenges' at the EU Parliament and online.
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay
January 30, 2025 at 2:53 PM
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Many people don't know that I've struggled much of my life with rare disease. Two, in fact: adamantinoma and osteomyelitis. On today, #RareDiseaseDay, I challenge you to donate and educate about lives like mine. rarediseases.org/campaign/rar...
February 28, 2025 at 2:07 PM
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Today, District 8 joins the #ShowYourStripes campaign in honor of #RareDiseaseDay and the approximately 30 million Americans living with a rare disease.
We encourage others to visit bit.ly/rdd2025 to learn about this especially rare day and get involved with us!
We encourage others to visit bit.ly/rdd2025 to learn about this especially rare day and get involved with us!
February 28, 2025 at 3:03 PM
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Challenges in diagnosing & treating rare kidney diseases remain, with limited genetic testing & poor integration of genetic info in LMICs. The ISN urges governments to advance innovative diagnostic approaches & ensure access to effective treatments. #RareDiseaseDay #KidneyHealthMatters
February 28, 2025 at 8:00 AM
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