March 1, 2026 at 2:19 PM
The #FIRENDO (National Network for Rare Endocrine Diseases ) members are active to celebrate & support the #RareDiseasesDay 👇👇👇
February 28, 2025 at 12:07 PM
The #FIRENDO (National Network for Rare Endocrine Diseases ) members are active to celebrate & support the #RareDiseasesDay 👇👇👇
Barcelona impulsa una revolución científica para acortar la odisea diagnóstica de las enfermedades raras #RareDiseasesDay #DiaMundialEnfermedadesRaras #diamundialdelasenfermedadesraras www.nationalgeographic.com.es/ciencia/rema...
www.nationalgeographic.com.es
February 28, 2026 at 8:49 PM
Barcelona impulsa una revolución científica para acortar la odisea diagnóstica de las enfermedades raras #RareDiseasesDay #DiaMundialEnfermedadesRaras #diamundialdelasenfermedadesraras www.nationalgeographic.com.es/ciencia/rema...
(Post 7)
I still hear internal noises that I shouldn’t hear, such as my eyes moving, as I have thinning of the other superior semicircular canal. But I have my life back, and intend to make the most of it.
#rarediseasesday #scds
I still hear internal noises that I shouldn’t hear, such as my eyes moving, as I have thinning of the other superior semicircular canal. But I have my life back, and intend to make the most of it.
#rarediseasesday #scds
February 28, 2026 at 11:34 PM
(Post 7)
I still hear internal noises that I shouldn’t hear, such as my eyes moving, as I have thinning of the other superior semicircular canal. But I have my life back, and intend to make the most of it.
#rarediseasesday #scds
I still hear internal noises that I shouldn’t hear, such as my eyes moving, as I have thinning of the other superior semicircular canal. But I have my life back, and intend to make the most of it.
#rarediseasesday #scds
Muy orgullosa de formar parte de este equipazo de investigación que estudia una enfermedad ultrarrara #Laforadisease, para dilucidar sus mecanismos moleculares y encontrar un tratamiento. #FEDER_ONG @rarascsic.bskysocial @ibv-csic.bsky social #diamundialdelasenfermedadesraras #rarediseasesday
February 28, 2026 at 2:05 PM
Muy orgullosa de formar parte de este equipazo de investigación que estudia una enfermedad ultrarrara #Laforadisease, para dilucidar sus mecanismos moleculares y encontrar un tratamiento. #FEDER_ONG @rarascsic.bskysocial @ibv-csic.bsky social #diamundialdelasenfermedadesraras #rarediseasesday
Today is #RareDiseasesDay
If you can, take a moment to reflect.
You don’t expect it until it happens to you.
There are many out there carrying an #InvisibleIllness, or sometimes a not so invisible one.
Take the time to be kind to your fellow human.
You do not know what they are carrying.
If you can, take a moment to reflect.
You don’t expect it until it happens to you.
There are many out there carrying an #InvisibleIllness, or sometimes a not so invisible one.
Take the time to be kind to your fellow human.
You do not know what they are carrying.
February 28, 2025 at 12:43 AM
Today is #RareDiseasesDay
If you can, take a moment to reflect.
You don’t expect it until it happens to you.
There are many out there carrying an #InvisibleIllness, or sometimes a not so invisible one.
Take the time to be kind to your fellow human.
You do not know what they are carrying.
If you can, take a moment to reflect.
You don’t expect it until it happens to you.
There are many out there carrying an #InvisibleIllness, or sometimes a not so invisible one.
Take the time to be kind to your fellow human.
You do not know what they are carrying.
February 28, 2025 at 3:44 PM
Proud to be a partner with ERDERA in this journey to spread awareness regarding rare diseases and improve the overall rare disease research landscape in Europe and beyond 💪
On this #RareDiseasesDay, take a moment to repost this! Together, we can make the lives of millions healthier and happier 💫
On this #RareDiseasesDay, take a moment to repost this! Together, we can make the lives of millions healthier and happier 💫
✨ Today is #RareDiseaseDay! ✨
Shining a light on the 300+ million people worldwide living with a rare disease. We raise awareness of their challenges and advocate for more research, care, and better policies. 🔬💪 Join us in spreading the word! 💫🗣️ #StrongerTogether @ec.europa.eu
Shining a light on the 300+ million people worldwide living with a rare disease. We raise awareness of their challenges and advocate for more research, care, and better policies. 🔬💪 Join us in spreading the word! 💫🗣️ #StrongerTogether @ec.europa.eu
February 28, 2025 at 9:26 AM
Proud to be a partner with ERDERA in this journey to spread awareness regarding rare diseases and improve the overall rare disease research landscape in Europe and beyond 💪
On this #RareDiseasesDay, take a moment to repost this! Together, we can make the lives of millions healthier and happier 💫
On this #RareDiseasesDay, take a moment to repost this! Together, we can make the lives of millions healthier and happier 💫
#RareDiseasesDay #ResearchMatters
Medical research matters. Research on #RareDiseases has led to many scientific and medical breakthroughs that have benefitted all of us
bsky.app/profile/disc...
Medical research matters. Research on #RareDiseases has led to many scientific and medical breakthroughs that have benefitted all of us
bsky.app/profile/disc...
On #RareDiseaseDay, we’re highlighting a case study that explores the impact of living with a rare, invisible condition and why research matters for understanding rare diseases and lived experience 🧬
Read the article here (Locke & Eastman, 2025) : bit.ly/4sdRIFi
#MedSky
Read the article here (Locke & Eastman, 2025) : bit.ly/4sdRIFi
#MedSky
February 28, 2026 at 9:33 PM
#RareDiseasesDay #ResearchMatters
Medical research matters. Research on #RareDiseases has led to many scientific and medical breakthroughs that have benefitted all of us
bsky.app/profile/disc...
Medical research matters. Research on #RareDiseases has led to many scientific and medical breakthroughs that have benefitted all of us
bsky.app/profile/disc...
Over 7,000 rare diseases affect more than 30 million people in the United States. Register to attend #RareDiseasesDay to learn about and engage in dialogue around rare diseases! https://buff.ly/4jhov8E
#NCATS, #NIH, #FDA, #raredisease
#NCATS, #NIH, #FDA, #raredisease
FDA-NIH Rare Disease Day 2025
Overview Sponsored by the U.S. Food and Drug Administration (FDA) and the National Center for Advancing Translational Sciences (NCATS), FDA-NIH Rare Diseas...
buff.ly
February 11, 2025 at 4:33 PM
Over 7,000 rare diseases affect more than 30 million people in the United States. Register to attend #RareDiseasesDay to learn about and engage in dialogue around rare diseases! https://buff.ly/4jhov8E
#NCATS, #NIH, #FDA, #raredisease
#NCATS, #NIH, #FDA, #raredisease
I think I count for #RareDiseasesDay! Hi I have Tetralogy of Fallot, a chronic heart condition I was born with. I've had open heart surgery twice. I'm proud to still be here and going strong! Photo from 2022.
February 28, 2026 at 8:14 PM
I think I count for #RareDiseasesDay! Hi I have Tetralogy of Fallot, a chronic heart condition I was born with. I've had open heart surgery twice. I'm proud to still be here and going strong! Photo from 2022.
el apoyo a las familias afectadas y el impulso a la investigación científica que permita mejorar el diagnóstico, el tratamiento y la calidad de vida de quienes conviven con estas patologías. #diamundialenfermedadesraras #rarediseasesday
February 28, 2026 at 12:17 PM
el apoyo a las familias afectadas y el impulso a la investigación científica que permita mejorar el diagnóstico, el tratamiento y la calidad de vida de quienes conviven con estas patologías. #diamundialenfermedadesraras #rarediseasesday
This #RareDiseasesDay, we’re spotlighting Prof Jane Davies from @imperialnhli.bsky.social, whose research is transforming #CysticFibrosis treatment and bringing hope to those with rare conditions.
"I really envisage a different future for today’s children..." www.imperial.ac.uk/stories/ref2...
"I really envisage a different future for today’s children..." www.imperial.ac.uk/stories/ref2...
Professor Jane Davies
As part of a series on the people behind our world-leading research, we meet an Imperial ecologist whose work is helping preserve biodiversity in Brazil's precious forests.
www.imperial.ac.uk
February 28, 2025 at 11:58 AM
This #RareDiseasesDay, we’re spotlighting Prof Jane Davies from @imperialnhli.bsky.social, whose research is transforming #CysticFibrosis treatment and bringing hope to those with rare conditions.
"I really envisage a different future for today’s children..." www.imperial.ac.uk/stories/ref2...
"I really envisage a different future for today’s children..." www.imperial.ac.uk/stories/ref2...
1/ On #RareDiseasesDay, sign our open letter demanding affordable access to lifesaving #CF meds.
A @who.int resolution on rare diseases is being negotiated, but leaked drafts FAIL to protect patients' right to affordable medicines. 🧵...
Sign: bit.ly/4kgnqyv
A @who.int resolution on rare diseases is being negotiated, but leaked drafts FAIL to protect patients' right to affordable medicines. 🧵...
Sign: bit.ly/4kgnqyv
February 28, 2025 at 11:21 AM
1/ On #RareDiseasesDay, sign our open letter demanding affordable access to lifesaving #CF meds.
A @who.int resolution on rare diseases is being negotiated, but leaked drafts FAIL to protect patients' right to affordable medicines. 🧵...
Sign: bit.ly/4kgnqyv
A @who.int resolution on rare diseases is being negotiated, but leaked drafts FAIL to protect patients' right to affordable medicines. 🧵...
Sign: bit.ly/4kgnqyv
With an estimated 3.5 million people in the UK living with a #raredisease, research is critical.
Our researchers have identified disease-causing genetic variants not picked up by regular testing oxfordbrc.nihr.ac.uk/hiding-in-pl...
#RareDiseasesDay
Our researchers have identified disease-causing genetic variants not picked up by regular testing oxfordbrc.nihr.ac.uk/hiding-in-pl...
#RareDiseasesDay
Hiding in plain sight: study identifies cryptic disease-causing genetic variants not detected by standard testing | NIHR Oxford Biomedical Research Centre
oxfordbrc.nihr.ac.uk
February 28, 2025 at 10:28 AM
With an estimated 3.5 million people in the UK living with a #raredisease, research is critical.
Our researchers have identified disease-causing genetic variants not picked up by regular testing oxfordbrc.nihr.ac.uk/hiding-in-pl...
#RareDiseasesDay
Our researchers have identified disease-causing genetic variants not picked up by regular testing oxfordbrc.nihr.ac.uk/hiding-in-pl...
#RareDiseasesDay
Definitely my favourite slide from the evening! 👏🏻🏴 By Dr. Jamie Duckers & Rhiannon Edwards from the #Wales National Rare Diseases Implementation Network
‘Wales is small enough to do great things’ 🌟
#RareDiseasesDay #2025 #GeneticAllianceUK
‘Wales is small enough to do great things’ 🌟
#RareDiseasesDay #2025 #GeneticAllianceUK
February 20, 2025 at 1:35 PM
Definitely my favourite slide from the evening! 👏🏻🏴 By Dr. Jamie Duckers & Rhiannon Edwards from the #Wales National Rare Diseases Implementation Network
‘Wales is small enough to do great things’ 🌟
#RareDiseasesDay #2025 #GeneticAllianceUK
‘Wales is small enough to do great things’ 🌟
#RareDiseasesDay #2025 #GeneticAllianceUK
💜CNAG Lights Up For Rare
Tomorrow it's #RareDiseasesDay, a day to raise awareness of the 300 million people living with rare diseases worldwide
At CNAG, we improve diagnosis through genomics and help families find answers
#LightUpForRare @rarediseaseday.bsky.social @erdera.bsky.social #rarediseases
Tomorrow it's #RareDiseasesDay, a day to raise awareness of the 300 million people living with rare diseases worldwide
At CNAG, we improve diagnosis through genomics and help families find answers
#LightUpForRare @rarediseaseday.bsky.social @erdera.bsky.social #rarediseases
February 27, 2026 at 8:30 AM
💜CNAG Lights Up For Rare
Tomorrow it's #RareDiseasesDay, a day to raise awareness of the 300 million people living with rare diseases worldwide
At CNAG, we improve diagnosis through genomics and help families find answers
#LightUpForRare @rarediseaseday.bsky.social @erdera.bsky.social #rarediseases
Tomorrow it's #RareDiseasesDay, a day to raise awareness of the 300 million people living with rare diseases worldwide
At CNAG, we improve diagnosis through genomics and help families find answers
#LightUpForRare @rarediseaseday.bsky.social @erdera.bsky.social #rarediseases
It’s #RareDiseasesDay. Sudden sensorineural hearing loss is mine. Woke up Deaf in one ear without warning. Your ability to communicate easily with the world vanishes overnight. Full story at noisysilence.ie Help fund hearing loss research: noisysilence.ie/2024/10/19/f... #RareDiseasesDay2025
February 28, 2025 at 11:50 PM
It’s #RareDiseasesDay. Sudden sensorineural hearing loss is mine. Woke up Deaf in one ear without warning. Your ability to communicate easily with the world vanishes overnight. Full story at noisysilence.ie Help fund hearing loss research: noisysilence.ie/2024/10/19/f... #RareDiseasesDay2025
New video is live. Introduction to takayasu’s from a #takayasus patient
youtu.be/gatFzbecKq4?...
#raredisease #chronicillness #rarediseasesday
youtu.be/gatFzbecKq4?...
#raredisease #chronicillness #rarediseasesday
What You Need To Know About Takayasu's Arteritis
YouTube video by Artie Carden
youtu.be
February 27, 2025 at 7:35 PM
New video is live. Introduction to takayasu’s from a #takayasus patient
youtu.be/gatFzbecKq4?...
#raredisease #chronicillness #rarediseasesday
youtu.be/gatFzbecKq4?...
#raredisease #chronicillness #rarediseasesday
🔬 February spotlight: Dr Myrona Goutaki, co-Chair of the BEAT-PCD CRC.
Ahead of #RareDiseasesDay (28 Feb), she emphasises why patient voices must shape rare disease research and the need for more accessible resources.
🔗: https://europeanlung.org/en/news-and-blog/conversation-with-myrona-goutaki/
Ahead of #RareDiseasesDay (28 Feb), she emphasises why patient voices must shape rare disease research and the need for more accessible resources.
🔗: https://europeanlung.org/en/news-and-blog/conversation-with-myrona-goutaki/
February 25, 2026 at 2:01 PM
🔬 February spotlight: Dr Myrona Goutaki, co-Chair of the BEAT-PCD CRC.
Ahead of #RareDiseasesDay (28 Feb), she emphasises why patient voices must shape rare disease research and the need for more accessible resources.
🔗: https://europeanlung.org/en/news-and-blog/conversation-with-myrona-goutaki/
Ahead of #RareDiseasesDay (28 Feb), she emphasises why patient voices must shape rare disease research and the need for more accessible resources.
🔗: https://europeanlung.org/en/news-and-blog/conversation-with-myrona-goutaki/
This #RareDiseasesDay, check out our #sciencepodcast episode with Dr. Sessions Cole where we dive into the diagnostic journey for people with #rarediseases
dnapodcast.com/episodes/202...
#genetics
dnapodcast.com/episodes/202...
#genetics
#207 N-Lorem: Dr. Sessions Cole on the Diagnostic Odyssey — DNA Today
The robust processes to evaluate applications to n-Lorem’s nano-rare patient treatments.
dnapodcast.com
February 28, 2025 at 3:40 PM
This #RareDiseasesDay, check out our #sciencepodcast episode with Dr. Sessions Cole where we dive into the diagnostic journey for people with #rarediseases
dnapodcast.com/episodes/202...
#genetics
dnapodcast.com/episodes/202...
#genetics
Following on from #RareDiseasesDay a few weeks ago, I’d like to bring your attention to a group called IgG4ward, and IgG4 awareness day on 4th April. They do an incredible amount of advocacy for this rare disease.
March 27, 2026 at 5:36 PM
Following on from #RareDiseasesDay a few weeks ago, I’d like to bring your attention to a group called IgG4ward, and IgG4 awareness day on 4th April. They do an incredible amount of advocacy for this rare disease.