February 28, 2025 at 7:34 AM
De nieuwe actie van Lucas' Droom. 🤩 #Rarediseaseday2025 #Lucasdroom
February 28, 2025 at 9:09 AM
De nieuwe actie van Lucas' Droom. 🤩 #Rarediseaseday2025 #Lucasdroom
I don't usually share my family, so excuse the scratched face - but for #RareDiseaseDay2025 I wanted to introduce K, who has Childhood Interstitial Lung Disease, as well as several more complex diagnoses. Healthcare in the USA is under threat. He deserves a full life. Please, keep fighting.
March 1, 2025 at 4:43 AM
I don't usually share my family, so excuse the scratched face - but for #RareDiseaseDay2025 I wanted to introduce K, who has Childhood Interstitial Lung Disease, as well as several more complex diagnoses. Healthcare in the USA is under threat. He deserves a full life. Please, keep fighting.
#RareDiseaseDay2025 I have an RYR1 related myopathy called Multiminicore Myopathy, having a rare disease can be really lonely thing.
Today is #RareDiseaseDay2025. I have #TrigeminalNeuralgia. It's estimated to affect 1 in 20,000 people and causes agonising facial pain. Just to be a bit rarer, I have both types of the disease (TN1 & TN2) and on both sides of my face (bilaterally) so I'm in constant pain.
February 28, 2025 at 11:56 AM
#RareDiseaseDay2025 I have an RYR1 related myopathy called Multiminicore Myopathy, having a rare disease can be really lonely thing.
February 28, 2025 at 1:59 PM
Rare diseases are individually rare, but cumulatively very common. Did you know ~5% of the world's population is impacted by a rare disease? You are not alone! #RareDiseaseDay2025
February 3, 2025 at 4:51 PM
Rare diseases are individually rare, but cumulatively very common. Did you know ~5% of the world's population is impacted by a rare disease? You are not alone! #RareDiseaseDay2025
We are rapidly approaching Rare Disease Month, and this year it's more important than ever to raise awareness. Because rare is many. Rare is strong. Rare is proud. #RareDiseaseDay2025
youtu.be/fIvqxQPjisI?...
youtu.be/fIvqxQPjisI?...
Rare Disease Day 2025 official video
YouTube video by Rare Disease Day
youtu.be
January 29, 2025 at 2:34 AM
We are rapidly approaching Rare Disease Month, and this year it's more important than ever to raise awareness. Because rare is many. Rare is strong. Rare is proud. #RareDiseaseDay2025
youtu.be/fIvqxQPjisI?...
youtu.be/fIvqxQPjisI?...
Today on Rare Disease Day,
I honor my miracle son Ethan.
With a rare diagnosis of Floating Harbor Syndrome (only 100 worldwide) enduring 24 surgeries/5 heart surgeries/heart attack/CP/nonverbal/my strong & brave little man makes the world a better place
#RareDiseaseDay2025
I honor my miracle son Ethan.
With a rare diagnosis of Floating Harbor Syndrome (only 100 worldwide) enduring 24 surgeries/5 heart surgeries/heart attack/CP/nonverbal/my strong & brave little man makes the world a better place
#RareDiseaseDay2025
February 28, 2025 at 6:58 PM
Today on Rare Disease Day,
I honor my miracle son Ethan.
With a rare diagnosis of Floating Harbor Syndrome (only 100 worldwide) enduring 24 surgeries/5 heart surgeries/heart attack/CP/nonverbal/my strong & brave little man makes the world a better place
#RareDiseaseDay2025
I honor my miracle son Ethan.
With a rare diagnosis of Floating Harbor Syndrome (only 100 worldwide) enduring 24 surgeries/5 heart surgeries/heart attack/CP/nonverbal/my strong & brave little man makes the world a better place
#RareDiseaseDay2025
À l’approche de la journée internationale des maladies rares, l'hôpital Necker s'illumine aux couleurs des maladies rares pour sensibiliser et mettre en lumière l’importance de la recherche et de l’accompagnement des patients et des familles.
#maladiesrares #raredeaseday #RareDiseaseDay2025
#maladiesrares #raredeaseday #RareDiseaseDay2025
February 26, 2025 at 6:26 PM
À l’approche de la journée internationale des maladies rares, l'hôpital Necker s'illumine aux couleurs des maladies rares pour sensibiliser et mettre en lumière l’importance de la recherche et de l’accompagnement des patients et des familles.
#maladiesrares #raredeaseday #RareDiseaseDay2025
#maladiesrares #raredeaseday #RareDiseaseDay2025
#RareDiseaseDay #RareDiseaseDay2025 #RDD2025. Recurrent FSGS #rFSGS is a ultrarare disease. We recently had a conference and we are building a community. Stay tuned for new updates, events, research opportunities.
@rfsgsinitiative.bsky.social @gbadegesinlab.bsky.social @alessiafornoni.bsky.social
@rfsgsinitiative.bsky.social @gbadegesinlab.bsky.social @alessiafornoni.bsky.social
March 1, 2025 at 6:27 PM
#RareDiseaseDay #RareDiseaseDay2025 #RDD2025. Recurrent FSGS #rFSGS is a ultrarare disease. We recently had a conference and we are building a community. Stay tuned for new updates, events, research opportunities.
@rfsgsinitiative.bsky.social @gbadegesinlab.bsky.social @alessiafornoni.bsky.social
@rfsgsinitiative.bsky.social @gbadegesinlab.bsky.social @alessiafornoni.bsky.social
February 28, 2025 at 8:30 AM
🌍 Today is #RareDiseaseDay 2025!
We stand with the 300 million people worldwide living with rare diseases.
By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future!
🔗 Read more: metab.ern-net.eu/rare-disease...
#RareDiseaseDay2025
We stand with the 300 million people worldwide living with rare diseases.
By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future!
🔗 Read more: metab.ern-net.eu/rare-disease...
#RareDiseaseDay2025
February 28, 2025 at 7:51 AM
🌍 Today is #RareDiseaseDay 2025!
We stand with the 300 million people worldwide living with rare diseases.
By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future!
🔗 Read more: metab.ern-net.eu/rare-disease...
#RareDiseaseDay2025
We stand with the 300 million people worldwide living with rare diseases.
By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future!
🔗 Read more: metab.ern-net.eu/rare-disease...
#RareDiseaseDay2025
February 28, 2025 at 8:27 PM
February 28, 2025 at 5:59 PM
In this #rarediseaseday2025 we cannot remain silent. We must fight on the beach and the bench. Share. Tell your stories. Call your elected officials. Call your unelected officials. #fightonthebench
March 1, 2025 at 1:05 AM
In this #rarediseaseday2025 we cannot remain silent. We must fight on the beach and the bench. Share. Tell your stories. Call your elected officials. Call your unelected officials. #fightonthebench
Retinal pigmented epithelium plays an important role by sustaining rods and cones, which are the photoreceptors within the retina. It helps in the maintenance of cells, recycles visual pigments and forms a portion of the blood retina barrier #sciart #science #RareDiseaseDay2025
February 28, 2025 at 7:26 PM
Retinal pigmented epithelium plays an important role by sustaining rods and cones, which are the photoreceptors within the retina. It helps in the maintenance of cells, recycles visual pigments and forms a portion of the blood retina barrier #sciart #science #RareDiseaseDay2025
Tomorrow is #RareDiseaseDay2025
To learn more about rare diseases ⤵️
www.rarediseaseday.org/what-is-a-ra...
I suffer from #FactorVLeiden
Do you or your loved ones have any rare diseases? Which one(s)?
To learn more about rare diseases ⤵️
www.rarediseaseday.org/what-is-a-ra...
I suffer from #FactorVLeiden
Do you or your loved ones have any rare diseases? Which one(s)?
What is a rare disease? – Rare Disease Day 2025
www.rarediseaseday.org
February 27, 2025 at 6:20 PM
Tomorrow is #RareDiseaseDay2025
To learn more about rare diseases ⤵️
www.rarediseaseday.org/what-is-a-ra...
I suffer from #FactorVLeiden
Do you or your loved ones have any rare diseases? Which one(s)?
To learn more about rare diseases ⤵️
www.rarediseaseday.org/what-is-a-ra...
I suffer from #FactorVLeiden
Do you or your loved ones have any rare diseases? Which one(s)?
For #RareDiseaseDay2025, @qs-neurogenetics.bsky.social is celebrating the invaluable contributions of our international collaborators, whose dedication is driving ground-breaking advancements in rare disease research across the globe. ucl.ac.uk/ion/news/202...
February 28, 2025 at 9:27 AM
For #RareDiseaseDay2025, @qs-neurogenetics.bsky.social is celebrating the invaluable contributions of our international collaborators, whose dedication is driving ground-breaking advancements in rare disease research across the globe. ucl.ac.uk/ion/news/202...
Thank you to everyone who came to #ShowYourStripes #NewMexico #UniversityofNewMexico #NewMexico #Raredisease #Rarediseaseday #rarediseaseday2025 #ABQ #NM #UNM
March 1, 2025 at 3:17 PM
Thank you to everyone who came to #ShowYourStripes #NewMexico #UniversityofNewMexico #NewMexico #Raredisease #Rarediseaseday #rarediseaseday2025 #ABQ #NM #UNM
Happy Rare Disease Day
Hear my rare disease story I shared with Northern Ireland Rare Disease Partnership's 1 in 17 series last year.
#RareDiseaseDay2025 #RareDiseaseDay #LightUpForRare
Hear my rare disease story I shared with Northern Ireland Rare Disease Partnership's 1 in 17 series last year.
#RareDiseaseDay2025 #RareDiseaseDay #LightUpForRare
Voices of the 1 in 17 - Rare Stories
YouTube video by NI Rare Disease Partnership
youtu.be
February 28, 2025 at 9:00 AM
Happy Rare Disease Day
Hear my rare disease story I shared with Northern Ireland Rare Disease Partnership's 1 in 17 series last year.
#RareDiseaseDay2025 #RareDiseaseDay #LightUpForRare
Hear my rare disease story I shared with Northern Ireland Rare Disease Partnership's 1 in 17 series last year.
#RareDiseaseDay2025 #RareDiseaseDay #LightUpForRare
Rare diseases may be individually rare, but did you know at least 300 million people worldwide are living with a rare disease? If you have a rare disease, you are not alone! #RareDiseaseDay2025 🦓
February 2, 2025 at 2:13 AM
Rare diseases may be individually rare, but did you know at least 300 million people worldwide are living with a rare disease? If you have a rare disease, you are not alone! #RareDiseaseDay2025 🦓
🦓 #RareDiseaseDay2025: members of CRI's Genetic & Metabolic Disease Program don stripes for disorders affecting fewer than 200K ppl in the U.S., such as inborn errors of #metabolism & #Cancer. Diagnosing “zebras” is hearing hoofbeats & thinking zebra not horse. 🧪 #relentlessdiscovery #RareDiseaseDay
February 28, 2025 at 6:39 PM
🦓 #RareDiseaseDay2025: members of CRI's Genetic & Metabolic Disease Program don stripes for disorders affecting fewer than 200K ppl in the U.S., such as inborn errors of #metabolism & #Cancer. Diagnosing “zebras” is hearing hoofbeats & thinking zebra not horse. 🧪 #relentlessdiscovery #RareDiseaseDay
HHS is skipping #RareDiseaseDay2025 – "For children and adults with rare diseases, even a momentary pause in funding for these programs or agencies has devastating, life-altering consequences."
www.axios.com/2025/02/25/r...
www.axios.com/2025/02/25/r...
Rare disease meeting gets pushed off by HHS
Individual rare diseases are, by definition, uncommon. But with thousands of rare diseases, they represent a large block of patients.
www.axios.com
February 26, 2025 at 12:25 PM
HHS is skipping #RareDiseaseDay2025 – "For children and adults with rare diseases, even a momentary pause in funding for these programs or agencies has devastating, life-altering consequences."
www.axios.com/2025/02/25/r...
www.axios.com/2025/02/25/r...