EURORDIS-Rare Diseases Europe
LightNews LightNews
eurordis.bsky.social
EURORDIS-Rare Diseases Europe
@eurordis.bsky.social
190 followers 2 following 30 posts
An alliance of non-profit organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Posts Replies Media Videos
eurordis.bsky.social
📚 New from REMEDi4ALL: A major review in the British Journal of Pharmacology identifies 33 policy barriers holding back drug repurposing in Europe.
A key step toward better policies & improved patient access to repurposed treatments.
👉 https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bph.70243
November 22, 2025 at 8:00 AM
eurordis.bsky.social
🌟 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.
rarediseaseday.bsky.social Rare Disease Day Official @rarediseaseday.bsky.social · 2d
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
November 20, 2025 at 4:07 PM
eurordis.bsky.social
📣 Deadline extended!

POV: When you thought you missed the #RareBarometer survey… but it’s now open until 14 December 😮👇

Don’t wait, we want to hear from you!
👉 Take the survey now: http://tiny.cc/RB-MH

November 19, 2025 at 8:01 AM
eurordis.bsky.social
💡 Your work can make an impact.

Share your research, advocacy, or innovation at #ECRD2026 — Europe’s leading rare disease policy event.

👉 Submit your poster abstract: https://go.eurordis.org/Submityourposter

#RareDiseases #PosterCall #Research
November 18, 2025 at 4:37 PM
eurordis.bsky.social
The EU’s proposed €2tn 2028-34 budget will define the future. But will it deliver for those living with rare diseases?

We call for a stronger health focus: ERNs funding, patient organisation support, digital infrastructure & a Rare Disease Action Plan.
👉 https://go.eurordis.org/eu-budget-rare
November 17, 2025 at 5:01 PM
eurordis.bsky.social
📷 “The world has the colours we paint (O mundo tem as cores que a gente pinta).”
This vibrant image from Brazil — last year’s winner, captures the creativity and strength within the rare disease community.

Share your story through your lens.

👉 Submit: https://go.eurordis.org/photos
'Submit your photo now, #eurordisphotoaward with the eurordis black pearl award logo on the side.' as a background a young girl in a wheelchair painting with colorful balloons decorating the background.
November 14, 2025 at 4:30 PM
eurordis.bsky.social
This #Movember, we’re encouraging more men living with a rare disease to take part in the latest #RareBarometer survey. Men often make up a smaller share of respondents, so hearing from you helps build a fuller picture of life with a rare condition.
👉 http://tiny.cc/RB-MH
Man in blue jacket overlooking icy landscape promoting rare disease experience survey. 'Providing participants valuable insights into their rare disease experience, take our survey'
November 13, 2025 at 4:30 PM
eurordis.bsky.social
💡 Your work can make an impact.

Share your research, advocacy, or innovation at #ECRD2026 — Europe’s leading rare disease policy event.

👉 Submit your poster: https://go.eurordis.org/Submityourposter

#RareDiseases #PosterCall #Research #EURORDIS
Two conference attendees discuss scientific posters displayed on boards in a bright, modern venue during a research event. ECRD 2026
November 12, 2025 at 8:00 AM
eurordis.bsky.social
💎 Registrations are now open for the 15th EURORDIS Black Pearl Awards!

Celebrate the achievements shaping the future of the rare disease community.

🗓 24 Feb 2026 | 📍 Brussels & Online

👉 Register now: https://go.eurordis.org/BPA2026
#BlackPearlAwards #EURORDIS #RareDiseases #Advocacy
Row of sleek star-shaped trophies on a table under purple lighting for the EURORDIS Black Pearl Awards 2026.
November 11, 2025 at 8:00 AM
eurordis.bsky.social
💜 When her daughter was diagnosed with Multiple Osteochondromas, Liana La Forgia found #strength through resilience, #advocacy & #community.

Her story reminds us that even in rare challenges, hope grows. 🌱

👉 Read her full story: https://go.eurordis.org/unexpectedstrength
November 8, 2025 at 1:00 PM
eurordis.bsky.social
Yesterday afternoon, our own Rita Francisco, spoke at Rare Diseases Portugal's event on Access to Therapeutic Innovation for Rare Diseases.

🌟Her keynote explored EU & PT perspectives on innovative therapies and equitable access for all.

#RareDiseases #EURORDIS #Innovation
“Speaker presenting at a EURORDIS event in front of a slide titled ‘Big Policy Momentum for Innovative Therapies in Europe: Can we cease it?’ showing a diagram linking rare disease policy areas.”
November 7, 2025 at 4:01 PM
eurordis.bsky.social
💡Submit your poster abstract for #ECRD2026, the leading rare disease policy event in Europe!

Last year’s standout: “ADhoc- An Immersive Serious Game” by Caroline Wernert-Iberg — raising #rarediseaseawareness among healthcare professionals.
👉 Submit now: https://go.eurordis.org/poster
“Graphic promoting the 13th European Conference on Rare Diseases, 3–4 June 2026 in Prague and online, with text reading ‘Looking for inspiration? Here’s last year’s top-scoring ERCD poster!’ and an image of the ADhoc serious game poster.”
November 6, 2025 at 8:00 AM
eurordis.bsky.social
📸 The EURORDIS Photo Award is back
Through our annual photography competition, we invite you to capture what it means to live with a rare disease and share it with the world!
🌍 Open to all.
🏆 Winners revealed at the #EURORDISAwards2026 Ceremony.
👉 https://go.eurordis.org/photos
“Three smiling children against a green wall with text reading ‘Photo Award – Submit your photo now!’ and the EURORDIS Black Pearl Awards logo.”
November 5, 2025 at 4:57 PM
eurordis.bsky.social
At The Parliament Magazine’s Health Summit2025, Rosa Castro called for an EU Action Plan on Rare Diseases – to connect initiatives like ERNs, JARDIN and ERDERA, strengthen patient participation, and drive faster, fairer access across Europe.
“Rosa Castro speaking at a panel event while other panelists sit on stage and Baiba Miltoviča appears on a large screen behind them via video link.”
November 5, 2025 at 8:00 AM
eurordis.bsky.social
💬 “The report of the Rare Barometer survey… provided me with validation and a new frame of reference.” — Marliena, patient and advocate

Now it’s your turn.
✍️ Take part: tiny.cc/RB-MH
Child laughing and playing with bubbles outdoors beside text reading ‘What helps you live well? Take the survey.’ Logos for Rare Barometer and EURORDIS Rare Diseases Europe.
November 4, 2025 at 8:00 AM
eurordis.bsky.social
🧬 The #EUBiotechAct represents a key opportunity to address barriers and ensure that innovation translates into both improved patient outcomes and industrial resilience.

🗓️ Have your say in the public consultation before 10 November.

🔗 Read more: https://go.eurordis.org/BiotechAct
Close-up of a pipette releasing a blue liquid drop into a clear well in a laboratory test tray.
November 1, 2025 at 8:00 AM
eurordis.bsky.social
💫 A wonderful close to the #ERDERA General Assembly!

Session 8: Training highlighted how the #EURORDISOpenAcademy empowers patient advocates & drives rare disease research across Europe by fostering learning, collaboration & impact. 💙
October 31, 2025 at 5:15 PM
eurordis.bsky.social
Are you 18–30 and living with (or supporting someone with) a #RareDisease?

💬 We’re looking for a European youth advocate to join the #RareDiseaseDay 2026 Raising Youth Voices project!

👉 Learn more and apply now: https://go.eurordis.org/YouthVoices

Deadline to apply: 9 November

#YouthAdvocacy
October 31, 2025 at 8:00 AM
eurordis.bsky.social
🎉 It’s been just over a year since the launch of #ERDERA, the European Rare Diseases Research Alliance!

At the #ERDERA General Assembly, Roseline Favresse (EURORDIS) spoke on patient & public involvement — ensuring research truly reflects patient needs. 💙
👉 https://erdera.org/
Panel of six speakers presenting on Patient and Public Involvement and Engagement in a university lecture hall with audience members using laptops.
October 30, 2025 at 5:01 PM
eurordis.bsky.social
At this year’s World Orphan Drug Congress Europe (#WODC) 2025, EURORDIS colleagues shared their expertise across key sessions on policy, research, and patient advocacy. #WODC2025 #RareDiseases

Here are the key takeaways 🧵⬇️ (1/8)
Four people sit in chairs on stage surrounded by the World Orphan Drug Congress logo. Matt Bolz-Johnson speaks into a microphone.
October 29, 2025 at 5:37 PM
eurordis.bsky.social
At the #ERNRND Annual Meeting, Ines Hernando, EURORDIS ERN & Healthcare Director, presented the European Rare Disease Lighthouses model, advancing access to specialised care for people with rare/complex conditions in Europe 🌍
A speaker stands at a podium presenting to a group seated in a modern, circular conference room with wood-paneled walls and large windows letting in natural light. The audience members are listening attentively, some taking notes, while the presenter speaks near a microphone and computer setup.
October 29, 2025 at 11:25 AM
eurordis.bsky.social
🎉 20 years of dialogue. 40 workshops of impact.

Last week, at its 40th edition, the #EURORDIS Round Table of Companies spotlit Patient Experience Data as the key to patient-centred innovation.

Read more: go.eurordis.org/EurordisDial...
A diverse group of people seated in a circle during a workshop or discussion session in a wooden-panelled room with natural light. One participant uses a wheelchair, and a woman standing on the right is speaking to the group. Audience seated in a bright conference room watching a presentation projected on a large screen. A man in the foreground is taking a photo of the slide with his phone. Conference attendees facing a stage where speakers are seated in front of a large screen displaying the title “Reporting from Brainstorming Sessions.” The room has high wooden walls and a skylight ceiling. People seated around round tables in a warmly lit restaurant with elegant chandeliers and greenery overhead. A woman stands and speaks into a microphone while others listen and smile.
October 28, 2025 at 4:10 PM
eurordis.bsky.social
Every #ECRD poster tells a story of research, collaboration & action for people living with a rare disease.

Share yours at #ECRD2026 and help shape the future of rare disease care in Europe.

📅 Deadline: 6 March 2026
👉 Submit: https://go.eurordis.org/ECRD2026Posters
"Submit a poster abstract!" A woman in a beige blazer and backpack attentively reads scientific posters displayed at a conference venue with large windows.
October 28, 2025 at 8:00 AM