#rarediseases are not always visible, so #colourUp4RARE ! More #research is needed to develop new diagnostic and treatment options and to ensure reliable care. The BLACKSWAN Foundation, with #ProRaris, was in Bern to show our colours. #RAREvolution #RareDiseaseDay #ShareYourColours
🤩 Thank you for your support this #RareDiseaseDay!
💪 Along with organisations like @rarediseaseday.bsky.social and @eurordis.bsky.social, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌
#ShareYourColours
#rarediseaseday
Our national and international #neuromuscular patient registries are proud to support #RareDiseaseDay!
Learn more about our work at jwmdrc.org/networking/registries
#LightUpForRare #ShareYourColours
🦋 #Lupus is a #RareDisease that affects nearly 500,000 people in Europe and over 5 million people in the world.
‼️However, lupus affects not only patients but also their loved ones. Let's raise awareness of the importance of an early diagnosis
#RareDiseaseDay #ShareYourColours
Today is #RareDiseaseDay!
And we have joined @rarediseaseday.bsky.social campaign.
Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours
www.youtube.com/watch?v=7J1o...
The @thecimr.bsky.social and MRC Mitochondrial Biology Unit are celebrating "Rare Research Day" TODAY!
By creating factsheets on how their work contributes to greater understanding and potential treatments.
#RareDiseaseDay #ShareYourColours #RareDiseaseDay2026 #UniversityofCambridge
A smiling young boy wearing glasses holds a bundle of glowing blue fairy lights in his hands, surrounded by soft light in a dark room.
🌍 The world is lighting up for Rare Disease Day! ✨
Visit a monument near you or light up your home to join the global chain of lights.
👉 Use our toolkits & event map to get started: https://go.rarediseaseday.org/LIGHTUP
#LightUpForRare #RareDiseaseDay #ShareYourColours
A computer screen shows the RareDiseaseDay web page. In front of it, aa pile of pink, blue, purple and green balloons, glowsticks and paint jars.
When you are a #raredisease researcher and you search your drawers for ideas of what to do this year...
Finger paint? Balloons? Glowsticks? Party poppers?
A week to go...
#RareDiseaseDay #Shareyourcolours #Showyourstripes
Three young people stand smiling against a purple and blue background with text reading “Young Voices! The future generation of the rare disease community.”
“Michael’s Story! Brugada Syndrome. 27 years old. “My family and friends stood like lighthouses…without them, I don’t know what would have happened. I want to help doctors make the right decisions, fast. To save lives. And to reduce mistakes.’ Read the full story!” Greek flag and a portrait of Michael, a young man wearing glasses.
“Anna’s Story! Chronic Recurrent Multifocal Osteomyelitis. 17 years old. “I always felt so alone with my illnesses, and I felt that nobody understood what I was going through. Pain is only temporary, so hold onto hope and...don’t ever give up.” Read the full story!” U.S. flag and a portrait of Anna, a smiling young woman wearing a dark green dress, standing against a purple background.
“Sushmita’s Story! Amelogenesis Imperfecta. 22 years old. “Growing up, the comments cut deeper than the condition itself. I embraced my introverted nature… channeling my energy into what truly mattered.’ Read the full story!” Nepal flag and a portrait of Sushmita, a young woman with long dark curly hair wearing a green lace top, standing against a turquoise and purple gradient background.
💜Meet our young heroes!
They’re sharing their stories to inspire others and shape the future of the rare disease community.
👉 You can read more heroes' stories here: https://go.rarediseaseday.org/heroes
#RareDiseaseDay #YoungVoices #ShareYourColours
A group of smiling people stand together in a dark room surrounded by glowing neon lights in green, pink, and yellow. The text above reads “How to Light Up for Rare Disease Day.”
🌍✨ Join the global chain of lights this #RareDiseaseDay!
Whether you’re a family lighting up your home or an organisation joining from the office, every light adds to our global chain of lights.🌆🏠
Access our toolkits here: https://go.rarediseaseday.org/LIGHTUP
#LightUpForRare #ShareYourColours
"Global chain of lights!" Above #LightUpForRare which curved around a pink globe covered in lights.
🌍💡 The global chain of lights keeps growing!
Join #LightUpForRare by lighting up your building or landmark — use our Illuminations Toolkit to get started: https://go.rarediseaseday.org/LIGHTUP
💬 Already joined? Comment & tell us where you saw lights last year!
#RareDiseaseDay #ShareYourColours
🌟 The countdown to the #RareDiseaseDay 2026 begins! 300M people worldwide deserve not only awareness, but #equity — in care, opportunity & access. 💜
Join the campaign: #Shareyourcolours, #LightUpForRare, and fight for visibility & equity for all.
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video 🎥 youtu.be/7J1oTfoIOGw
Let’s bring about equity in more ways than even we can imagine!
#ShareYourColours
Today is #rarediseaseday2025
Rare diseases are rare, but there are many people living with a rare disease.
By brighten up our workplace with shades of pink, blue, green, and purple 🩷💙💚💜 we, the FunGen team, want to help raising visibility for rare diseases.
#ShareYourColours
🤩 Thank you for your support this #RareDiseaseDay!
💪 Along with organisations like @rarediseaseday and @eurordis, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌
#ShareYourColours
#rarediseaseday
Finalizamos el Día Internacional de Concienciación sobre la #DistrofiaMiotónica con un libro muy práctico sobre la Distrofia Miotónica Tipo 1, #DM1 o Enfermedad de #Steinert
http://bit.ly/DM1Los
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
Actualmente no existe ninguna cura para la #DistrofiaMiotónica ni tratamientos específicos. Únicamente hay tratamientos para mitigar sus síntomas
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
Afortunadamente, en la actualidad hay más de 40 empresas que están investigando para encontrar una cura o un tratamiento para la #DistrofiaMiotónica. Nuestra esperanza es que tengan éxito en breve
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
Al nacer los síntomas de #DistrofiaMiotónica Tipo 1 pueden ser dificultad para tragar o succionar y respirar, ausencia de reflejos, deformidades y debilidad muscular
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
La #DistrofiaMiotónica tiene muchos grados de severidad, incluso dentro de la misma familia es probable que no todos los miembros tengan los mismos síntomas
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
La #miotonía es una característica identificativa de la #DistrofiaMiotónica y es la incapacidad para relajar los músculos voluntariamente una vez contraídos de forma súbita
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
La #DistrofiaMiotónica afecta al sistema nervioso central y otros sistemas corporales: corazón, glándulas suprarrenales, tiroides, ojos, tracto gastrointestinal, etc.
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
Rare Disease Day
Today, we recognise the 300 million people worldwide living with #RareDisease 💜
Check out these upcoming local events to learn more—details in the posters below!
#RareDiseaseDay #ShareYourColours
Cuando la transmisión es hereditaria, se produce anticipación de la #DistrofiaMiotónica. Los síntomas se producen antes y de forma más grave que en sus progenitores
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
La #DistrofiaMiotónica es una enfermedad hereditaria autosómica dominante. Si sólo un miembro de la pareja la padece, la probabilidad de transmitirla a sus hijos es del 50%
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
🦋 #Lupus is a #RareDisease that affects nearly 500,000 people in Europe and over 5 million people in the world.
‼️However, lupus affects not only patients but also their loved ones. Let's raise awareness of the importance of an early diagnosis
#RareDiseaseDay #ShareYourColours
Millones de afectados por #DistrofiaMiotónica están sin diagnósticar. Lo que redunda en posibles riesgos para su vida, por ejemplo en caso de una simple intervención quirúrgica con anestesia
#DíadelasEnfermedadesRaras #RareDiseaseDay #ComparteTusColores #ShareYourColours
El diagnóstico de la #DistrofiaMiotónica requiere de un análisis genético que no siempre es posible o es barato
#DíadelasEnfermedadesRaras #RareDiseaseDay
#ComparteTusColores #ShareYourColours
Además, la #DistrofiaMiotónica Tipo 1 puede clasificarse en: leve, clásica y congénita en función del número de repeticiones CTG del paciente
#DíadelasEnfermedadesRaras #RareDiseaseDay #ComparteTusColores #ShareYourColours
Today is #RareDiseaseDay!
And we have joined @rarediseaseday campaign.
Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours
https://s.mtrbio.com/psmkqzvomn
