Clinical trials: https://bionews.com/rare-disease-day/
Clinical trials aren’t treatments: they’re experiments designed to test a hypothesis and help us learn.
#RareDisease #RareDiseaseWeek #KeepinItRare #NORD
Clinical trials: https://bionews.com/rare-disease-day/
Clinical trials aren’t treatments: they’re experiments designed to test a hypothesis and help us learn.
#ClinicalTrials #RareDisease #RareDiseaseWeek #KeepinItRare #NORD
Watch here: https://bionews.com/rare-disease-day/
Clinical trials aren’t treatments: they’re experiments designed to test a hypothesis and help us learn. Edward reminds us that while hope is important, it’s just as crucial to manage expectations.
#ClinicalTrials #RareDisease #RareDiseaseWeek
Celebrate rare: https://bionews.com/rare-disease-day/
AI can make information easier to reach—but is it always reliable?” 🤖 In this clip, Young explores both the promise and the pitfalls of popular AI tools in the rare disease community. 💬
#RareDisease #AdaptiveAI #RareDiseaseWeek
Jen shares advice for fellow “chronically ill warriors” on finding the right care team. Her message is simple but powerful: trust your gut, and never settle for a provider who makes you feel disrespected or dismissed. You deserve care that listens, respects, and supports you. 💪💜
#RareDiseaseWeek
Follow @karmactive.bsky.social for more
#RareDisease #FDA #MAHA #HHS #GeneTherapy #HealthPolicy #PublicHealth #RareDiseaseWeek
This post is for informational and educational purposes only. If you think any of the material in this post shouldn't be here, just inform us and we'll act promptly.
DSF is on Capitol Hill for #RareDC2026 with 13 Dravet families—part of Rare Disease Week hosted by the EveryLife Foundation for Rare Diseases.
Reply with a 💜 to thank these families. #RareDiseaseWeek #PatientAdvocacy
Read Danita's story here: https://bionews.com/rare-disease-day/
Danita, a mother and caregiver, shares how her journey has evolved as her daughter with HE has grown more independent.
#CaregiverLife #RareDiseaseCommunity #RareDiseaseWeek #KeepinItRare
During #RareDiseaseWeek, we’re highlighting the role of genetic testing. For many families, this is an important next step, even after diagnosis. Knowing the specific gene variant can inform care and open access to clinical studies.
Learn more here: bit.ly/3OrFxpQ
Rare Disease Week starts today. FTD is rare, but our community is strong. Being counted in the FTD Disorders Registry helps drive research, inform better studies, and move us closer to treatments.
Read more:
ftdregistry.org/press/being-...
#endFTD #RareDiseaseWeek
Check out the award-winning "Yamina's Life" blog, which helps audiences understand what it's like living with gastroparesis, a chronic disorder causes delayed stomach emptying, often due to nerve damage. #RareDiseaseWeek #RareDiseaseDay #RareButNotAlone #youthadvocacy www.youtube.com/yaminahsaini
On Day 2 of #RareDiseaseWeek, I'm remembering how Ida Mirković Knaus and Yamina Hsaini taught @nationalpress.bsky.social Rare Diseases Reporting fellows about the power of youth advocacy. #RareDiseaseDay #RareButNotAlone. www.youtube.com/watch?v=8VIn...
The moment we've been waiting to tell you! We are very proud to present to you our Little Red Book in PRINT and use it to help explain what life is like with a rare #chromosome or #gene disorder.
Buy now on our online shop: https://ow.ly/Rl3G50YhZGI
#RareDiseaseWeek #RareDiseaseDay
Shining a light on hereditary angioedema this Rare Disease Week—because every rare voice deserves to be seen, heard, and supported. 💡
How will you #LightUpForRare?
#RareDiseaseDay #RareDiseaseWeek #LightUpForRare @rarediseasedayofficial
South East Genomics Medicine service have a line up of events across #RareDiseaseWeek. Open to all, take a look and register for any event that interest you.
Find links and more information on their events page: southeastgenomics.nhs.uk/news-and-events/events/
🧬 The FDA is hosting a virtual Rare Disease Day 2026 public meeting on Feb 23.
The SCDC will be attending—will you? Let us know how you or your organization are engaging during #RareDiseaseDay or #RareDiseaseWeek.
🔗 Learn more: https://ow.ly/TNY550YcnmZ
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
#HAE #RareDiseaseWeek #RareButNotInvisible #HereditaryAngioedema #ChronicIllnessCommunity #LifeIsLikeABoxOfChocolates #UnpredictableButPowerful #RareDiseaseDay #PatientVoices #AdvocacyInAction #ChronicIllnessAwareness #AngioedemaNews #BioNews
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
LAST DAY TO REGISTER!
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
🏛️ Rare Disease Hill Day | Feb 23–26, 2026 | Washington, DC
📝 Join us in DC or virtually:
https://forms.gle/N2QhTN6ExsPpcdLk8
💙🖤 Let’s make rare disease a priority on Capitol Hill.
#HillDay #RareDiseaseWeek #ACureInSight #SeeACure
Join us for Rare Disease Week on Capitol Hill, Feb 24–26, 2026! Educate Congress & apply for travel scholarships by Nov 8. Learn More: everylifefoundation.org/rare-advocates/rare-dise... #RareDiseaseWeek #LAMFoundation #EveryLifeFoundation #CapitolHill #RareDiseaseAdvocacy
People with rare diseases fight so hard to have their voices to be heard to begin with, this is heartbreaking I am so sorry. #RareDiseaseWeek
AVP-D is a rare disorder that disrupts the body's ability to regulate water balance, leading to excessive urination, extreme thirst, and dehydration risk. When paired with adipsia (lack of thirst), it becomes life-threatening. Awareness & research are critical! #RareDiseaseWeek
It's #RareDiseaseWeek, and our friends at #ProjectSleep will be one of the speakers at #WashingtonPostLive's talk tomorrow! Register to learn about rare #SleepDisorders and other #RareDiseases at https://buff.ly/4kstRia
