Such an incredible event that brought so many families together to share their stories #rarebutnotalone #RareDiseaseDay
x.com/Iwase_Lab/stat…
x.com/Iwase_Lab/stat…
January 29, 2025 at 10:57 PM
Such an incredible event that brought so many families together to share their stories #rarebutnotalone #RareDiseaseDay
x.com/Iwase_Lab/stat…
x.com/Iwase_Lab/stat…
Today is #TBCK Awareness Day! 🧬
To read our quick read guide on TBCK syndrome head to: bit.ly/TBCK
#TBCKAwarenessDay #RareButNotAlone #UniqueCharity #GeneticDisorders #ChromosomeDisorders
To read our quick read guide on TBCK syndrome head to: bit.ly/TBCK
#TBCKAwarenessDay #RareButNotAlone #UniqueCharity #GeneticDisorders #ChromosomeDisorders
February 1, 2025 at 8:00 AM
Today is #TBCK Awareness Day! 🧬
To read our quick read guide on TBCK syndrome head to: bit.ly/TBCK
#TBCKAwarenessDay #RareButNotAlone #UniqueCharity #GeneticDisorders #ChromosomeDisorders
To read our quick read guide on TBCK syndrome head to: bit.ly/TBCK
#TBCKAwarenessDay #RareButNotAlone #UniqueCharity #GeneticDisorders #ChromosomeDisorders
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 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
February 28, 2025 at 9:06 AM
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 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
🌍 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
February 28, 2025 at 7:40 AM
🌍 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
💡 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
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
February 28, 2025 at 10:57 AM
💡 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
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
💙 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
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
February 27, 2025 at 10:28 PM
💙 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
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
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...
#RareDiseaseDay #RareButNotAlone
vipnews.tv/ellis-van-cr...
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.
vipnews.tv
March 1, 2026 at 1:43 AM
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...
#RareDiseaseDay #RareButNotAlone
vipnews.tv/ellis-van-cr...
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...
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
apublica.org
February 28, 2026 at 9:59 PM
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...
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...
bernama.com/en/bfokus/ne...
- New Policy On Rare Diseases Brings Hope To Patients, Carers
Pompe disease, Malaysian Rare Disorders Society, N
bernama.com
February 27, 2026 at 2:10 PM
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...
bernama.com/en/bfokus/ne...
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
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, ...
www.youtube.com
February 24, 2026 at 12:23 PM
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 Power of Youth Advocacy for Rare Disease Patients and Families
YouTube video by National Press Foundation
www.youtube.com
February 24, 2026 at 12:23 PM
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...
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...
@nationalpress.bsky.social Rare Diseases Reporting fellow Davis Buyondo of The New Vision newspaper. #RareDiseaseDay #RareButNotAlone www.newvision.co.ug/category/new...
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 ...
www.newvision.co.ug
February 23, 2026 at 5:56 PM
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...
@nationalpress.bsky.social Rare Diseases Reporting fellow Davis Buyondo of The New Vision newspaper. #RareDiseaseDay #RareButNotAlone www.newvision.co.ug/category/new...
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_...
@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_...
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...
www.instagram.com
November 19, 2025 at 10:11 PM
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_...
@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_...
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
youtube.com/watch?v=mUQW...
#globalhealth
#rarediseases
#innovation
#rarebutnotalone
A Breakthrough in Medicine: Personalized Gene Editing to Save KJ
YouTube video by The Children's Hospital of Philadelphia
youtube.com
November 17, 2025 at 8:14 PM
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
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
@upenn.edu and @childrensphila.bsky.social
. #rarediseases #innovation #rarebutnotalone
November 17, 2025 at 8:09 PM
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
@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
November 17, 2025 at 7:59 PM
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
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
#Delta4 #RareButNotAlone #DrugRepurposing #AIforRareDiseases #Health
March 29, 2025 at 5:04 PM
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
#Delta4 #RareButNotAlone #DrugRepurposing #AIforRareDiseases #Health
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
Advancing #HumanGenetics research is essential for better diagnosis and lifelong outcomes. 🧬
#RareDiseaseDay #RareButNotAlone
February 28, 2026 at 10:32 AM
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
Advancing #HumanGenetics research is essential for better diagnosis and lifelong outcomes. 🧬
#RareDiseaseDay #RareButNotAlone
Roughly 1 in 10 people live with a rare disease, and most rare conditions still have no approved treatment.
Research changes that, but only when patients share their experiences. If you live with a rare condition, your voice matters.
#RareDisease #1in10 #RareButNotAlone
Research changes that, but only when patients share their experiences. If you live with a rare condition, your voice matters.
#RareDisease #1in10 #RareButNotAlone
June 15, 2026 at 7:43 PM
Roughly 1 in 10 people live with a rare disease, and most rare conditions still have no approved treatment.
Research changes that, but only when patients share their experiences. If you live with a rare condition, your voice matters.
#RareDisease #1in10 #RareButNotAlone
Research changes that, but only when patients share their experiences. If you live with a rare condition, your voice matters.
#RareDisease #1in10 #RareButNotAlone
One day, I hope Netflix tells more rare disease stories. 🎬💙
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
July 23, 2026 at 3:34 PM
One day, I hope Netflix tells more rare disease stories. 🎬💙
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
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 does not mean alone.
#RareDiseaseDay #RareButNotAlone #AwarenessMatters #StrongerTogether
February 28, 2026 at 5:01 PM
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 does not mean alone.
#RareDiseaseDay #RareButNotAlone #AwarenessMatters #StrongerTogether
One day, I hope Netflix tells more rare disease stories. 🎬💙
Until then, we’ll keep sharing ours here. Connect with others living with myasthenia gravis: https://bit.ly/4pA1Qbf
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
Until then, we’ll keep sharing ours here. Connect with others living with myasthenia gravis: https://bit.ly/4pA1Qbf
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
July 23, 2026 at 4:07 PM
One day, I hope Netflix tells more rare disease stories. 🎬💙
Until then, we’ll keep sharing ours here. Connect with others living with myasthenia gravis: https://bit.ly/4pA1Qbf
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
Until then, we’ll keep sharing ours here. Connect with others living with myasthenia gravis: https://bit.ly/4pA1Qbf
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
#HAE #HereditaryAngioedema #Angioedema #RareDisease #RareDiseaseCommunity #ChronicIllness #ChronicIllnessCommunity #HAEAwareness #HAEWarrior #PatientVoice #PreventiveTreatment #HAEAttack #SwellPride #DisabilityAwareness #InvisibleIllness #RareButNotAlone #BioNews #AngioedemaNews
January 8, 2026 at 3:03 PM