Hear from leading voices advancing rare disease research with #KidsFirstDRC. Share the future of #scientificdiscovery. Watch the recording https://monkeylink.co/7c9bbb #RareDiseaseFamilies #RareButNotAlone

LIVE at Noon ET! See the progress and partnerships advancing rare disease research and care. https://monkeylink.co/8508c3

#TheRareWeShare #RareDiseaseFamilies #KidsFirstDRC #RareButNotAlone

Ellis–Van Creveld and the Challenges in Rare Disease Care | VIPnews.tv One family’s experience with Ellis–Van Creveld syndrome shows how genes, health systems, and geography together shape survival.

As #WorldRareDiseaseDay2026 draws to a close, I'm sharing one more terrific feature about a family battline Ellis-van Creveld Syndrome, from 2025 @nationalpress.bsky.social Rare Diseases Reporting fellow Linord Moudou!
#RareDiseaseDay #RareButNotAlone
vipnews.tv/ellis-van-cr...

Pain and Hope: A Firsthand Account of Rare Disease Policy within the SUS Care for rare diseases is advancing, but challenges remain in the world's largest universal public healthcare system

Another 2025 @nationalpress.bsky.social fellow, freelancer Marcia Dementshuk of Brazil, shared her personal journey of living with immune-mediated axonal polyneuropathy for @apublica.org. #WorldRareDiseaseDay2026 #RareButNotAlone #RareDiseaseDay apublica.org/2026/02/pain...

Let’s raise our voices, share resources, and remind one another that no one walks this journey by themselves.

Rare does not mean alone.

#RareDiseaseDay #RareButNotAlone #AwarenessMatters #StrongerTogether

Rare diseases affect approximately 300 million people worldwide. Over 70% are genetic, yet many still face diagnostic delays and limited access to care.
Advancing #HumanGenetics research is essential for better diagnosis and lifelong outcomes. 🧬
#RareDiseaseDay #RareButNotAlone

Ahead of the February 28 #RareDiseaseDay, I'm sharing this feature from journalist Soon Li Wei, who was a 2025 @nationalpress.bsky.social Rare Diseases Reporting fellow. She explored the impact of Malaysia's new rare disease policy. #rarediseases #RareButNotAlone
bernama.com/en/bfokus/ne...

See how #KidsFirst sparks new discoveries for kids with rare disease. Researchers and families share real progress, collaboration, and what it means for children. RSVP today: monkeylink.co/8508c3

#TheRareWeShare #RareDiseaseFamilies #KidsFirstDRC #RareButNotAlone

Connect with researchers and families reshaping scientific discovery to save kids. Register now: https://monkeylink.co/8508c3

#TheRareWeShare #RareDiseaseFamilies #KidsFirstDRC #RareButNotAlone

Yamina's Life Hello! I’m from France but you can always activate the English subtitles ^~^ Living with too misunderstanding/rare health conditions and being a complex case with a particular experience, since 2014, ...

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

The Power of Youth Advocacy for Rare Disease Patients and Families YouTube video by National Press Foundation

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...

Health: Data gaps leave Uganda’s motor neuron disease patients undiagnosed MND is a rare progressive disease that affects the nerves controlling voluntary movement leading to weakness and stiffness in the muscles of both arms and legs. This also leads to paralysis, mobility ...

I'm starting my #RareDiseaseWeek2026 by sharing this feature about motor neuron disease in Uganda, produced by 2025
@nationalpress.bsky.social Rare Diseases Reporting fellow Davis Buyondo of The New Vision newspaper. #RareDiseaseDay #RareButNotAlone www.newvision.co.ug/category/new...

#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth #TelomereBiologyDisorders #DyskeratosisCongenita #HopeThroughResearch #PatientAdvocacy #ResearchMatters #RareButNotAlone

The Rare We Share Kids First Community Webinar brings families, doctors, and researchers together for a meaningful conversation in advancing rare disease research and care.

Join Us: https://monkeylink.co/8508c3
#TheRareWeShare #RareDiseaseFamilies #KidsFirstDRC #RareButNotAlone

February is Rare Disease Month 💜

Rare doesn’t mean alone.
Rare doesn’t mean invisible.

Here’s to awareness, advocacy, and community. #RareDiseaseMonth #RareButNotAlone

For rare conditions, connection is everything. Register now to help shape the future of #pediatricresearch

https://monkeylink.co/8508c3

#TheRareWeShare #RareDiseaseFamilies #KidsFirstDRC #RareButNotAlone

#HAE #HereditaryAngioedema #Angioedema #RareDisease #RareDiseaseCommunity #ChronicIllness #ChronicIllnessCommunity #HAEAwareness #HAEWarrior #PatientVoice #PreventiveTreatment #HAEAttack #SwellPride #DisabilityAwareness #InvisibleIllness #RareButNotAlone #BioNews #AngioedemaNews

#HAE #HereditaryAngioedema #ShineALightOnHAE #ChronicIllnessCommunity #HAECaregiver #RareDisease #RareButNotAlone #PatientVoice #MedicalAdvocacy #SpeakUpForYourHealth #BioNews #AngioedemaNews

Rachel Jones on Instagram: "Day 3 of the National Press Foundation Rare Diseases Reporting fellowship featured powerful advice about tracking funding, collecting information about the lives of people ... Discover the power of patient-led advocacy and leadership in shaping care, research, and policy for rare diseases, as seen through the stories of experts and families impacted by these conditions. Exp...

Check out these highlights from Day 3 of the 2025
@nationalpress.bsky.social Rare Diseases Reporting Fellowship, featuring journalist Rupsa Chakraborty,
Jessie Dubief of EURORDIS, Darby Gavin of NORD +
Sarita Edwards of the E.WE Foundation.
#rarebutnotalone

www.instagram.com/reel/DRQNqK_...

A Breakthrough in Medicine: Personalized Gene Editing to Save KJ YouTube video by The Children's Hospital of Philadelphia

Ahrens-Nicklas and Musunuru are the scientific team behind the historic personalized CRISPR-based gene-editing therapy that saved the life of Baby K.J. Muldoon. @upenn.edu @childrensphila.bsky.social
youtube.com/watch?v=mUQW...
#globalhealth
#rarediseases
#innovation
#rarebutnotalone

The 2025 @nationalpress.bsky.social Rare Diseases Reporting fellows had the extraordinary privilege of being briefed by researchers Rebecca Ahrens-Nicklas and Kiran Musunuru of
@upenn.edu and @childrensphila.bsky.social

. #rarediseases #innovation #rarebutnotalone

The @nationalpress.bsky.social Rare Disease Reporting Fellowship launched with insights from James Levine, president of Fondation Ipsen. He helped journalists reimagine the future by communicating the potential of biotech innovation in the rare disease realm. #rarediseases #RareButNotAlone

A graphic featuring a black and white photo of a group of women walking through the woods with their arms around each other supportively. The caption reads: "Sarcoma can be a lonely road. Tag someone who walked with you."

Look back on your sarcoma journey and think of the people who never let you walk alone. Tag them and share one thing they did that carried you through. SPAGN’s member groups across the globe create a support network for thousands.💛

#SarcomaAwarenessMonth2025 #RareButNotAlone

Rare diseases are complex, but every Patient deserves a Solution. At Delta4, we believe AI-driven drug repurposing can accelerate new breakthroughs especially for rare disease patients. Together, we want to make a difference.

#Delta4 #RareButNotAlone #DrugRepurposing #AIforRareDiseases #Health

The Pediatric Neurology Editorial Board wishes you a happy #RareDiseaseDay! Rare doesn’t mean invisible—we’re here to prove it. Here’s to the patients, families, doctors, and scientists advocating and advancing care for rare diseases every day. #RareButNotAlone

💡 Light Up for Rare – Rare Disease Day 2025 💜💙💚
This Rare Disease Day, we are coming together to Light Up for Rare and shine a spotlight on the 300 million people worldwide living with a rare disease.

#LightUpForRare #RareDiseaseDay #SupportRare #RareButNotAlone #ThankYouNHS

Today, we raise our voices for the 300 million people living with rare diseases worldwide.

It’s a day to celebrate their resilience, support their journey, and spread awareness. Let’s work together to create a world where no one feels isolated in their struggle. 💪
#RareDiseaseDay #RareButNotAlone

🌍💜 It's Rare Disease Day! Let's highlight the millions affected by rare diseases globally. 💪 Every voice is crucial for awareness, research, treatment, and support. Together, we're stronger! Spread the word and make a difference. #RareDiseaseDay #RareButNotAlone #AwarenessMatters #PatientVoices

🌍 Rare, but not alone! If all people with rare diseases formed a country, it’d be the world’s 3rd largest. 🏥 7,000+ rare diseases exist - including invasive fungal diseases. Research is the key to better treatments! 🔬💙 #RareDiseaseDay #RareButNotAlone #FungalInfections #ResearchMatters #IFI

💙 Rare Disease Day 2025 💙

Rare kidney diseases may be individually uncommon, but together they affect thousands of children. 🧬Genomics is changing the game—early diagnosis means better care, targeted treatments, and hope. 🧵 1/4

#RareDiseaseDay #Genetics #KidneyHealth #RareButNotAlone