EURORDIS-Rare Diseases Europe
@eurordis.bsky.social
An alliance of non-profit organisations working across borders and diseases to improve the lives of all people living with rare diseases.
📚 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
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
📚 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
A key step toward better policies & improved patient access to repurposed treatments.
👉 https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bph.70243
📣 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
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
📣 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
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
💡 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
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
💡 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
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
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
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
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
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
📷 “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
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
November 14, 2025 at 4:30 PM
📷 “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
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
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
👉 http://tiny.cc/RB-MH
November 13, 2025 at 4:30 PM
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
👉 http://tiny.cc/RB-MH
💡 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
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
November 12, 2025 at 8:00 AM
💡 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
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
💎 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
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
November 11, 2025 at 8:00 AM
💎 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
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
💜 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
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
💜 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
Her story reminds us that even in rare challenges, hope grows. 🌱
👉 Read her full story: https://go.eurordis.org/unexpectedstrength
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
🌟Her keynote explored EU & PT perspectives on innovative therapies and equitable access for all.
#RareDiseases #EURORDIS #Innovation
November 7, 2025 at 4:01 PM
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
🌟Her keynote explored EU & PT perspectives on innovative therapies and equitable access for all.
#RareDiseases #EURORDIS #Innovation
💡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
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
November 6, 2025 at 8:00 AM
💡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
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
📸 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
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
November 5, 2025 at 4:57 PM
📸 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
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
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.
November 5, 2025 at 8:00 AM
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.
💬 “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
Now it’s your turn.
✍️ Take part: tiny.cc/RB-MH
November 4, 2025 at 8:00 AM
💬 “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
Now it’s your turn.
✍️ Take part: tiny.cc/RB-MH
🧬 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
🗓️ Have your say in the public consultation before 10 November.
🔗 Read more: https://go.eurordis.org/BiotechAct
November 1, 2025 at 8:00 AM
🧬 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
🗓️ Have your say in the public consultation before 10 November.
🔗 Read more: https://go.eurordis.org/BiotechAct
💫 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. 💙
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
💫 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. 💙
Session 8: Training highlighted how the #EURORDISOpenAcademy empowers patient advocates & drives rare disease research across Europe by fostering learning, collaboration & impact. 💙
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
💬 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
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
💬 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
🎉 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/
At the #ERDERA General Assembly, Roseline Favresse (EURORDIS) spoke on patient & public involvement — ensuring research truly reflects patient needs. 💙
👉 https://erdera.org/
October 30, 2025 at 5:01 PM
🎉 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/
At the #ERDERA General Assembly, Roseline Favresse (EURORDIS) spoke on patient & public involvement — ensuring research truly reflects patient needs. 💙
👉 https://erdera.org/
🧠 Finally, Matt Bolz-Johnson spoke on the importance embedding psychological support in R&D. He highlighted how designing clinical research and therapeutic pathways that integrate psychological support can significantly improve the health outcomes of those with rare diseases. (7/8)
October 29, 2025 at 5:37 PM
🧠 Finally, Matt Bolz-Johnson spoke on the importance embedding psychological support in R&D. He highlighted how designing clinical research and therapeutic pathways that integrate psychological support can significantly improve the health outcomes of those with rare diseases. (7/8)
🏥 Roseline Favresse also shared findings from the #RareBarometer survey on diagnosis. She noted that access to diagnosis is faster when patients are referred to centres of expertise, underscoring the importance of connecting them through national and European Reference Networks. (6/8)
October 29, 2025 at 5:37 PM
🏥 Roseline Favresse also shared findings from the #RareBarometer survey on diagnosis. She noted that access to diagnosis is faster when patients are referred to centres of expertise, underscoring the importance of connecting them through national and European Reference Networks. (6/8)
🤝 Jessie Dubief then presented our #RareBarometer programme, explaining that these studies enable the creation of evidence-based, patient-centred policies. She demonstrated how industry can partner with patient organisations to help them maximise the impact of their own data. (5/8)
October 29, 2025 at 5:37 PM
🤝 Jessie Dubief then presented our #RareBarometer programme, explaining that these studies enable the creation of evidence-based, patient-centred policies. She demonstrated how industry can partner with patient organisations to help them maximise the impact of their own data. (5/8)
💬 Later that day, Julien Delaye contributed to a session on navigating the new Joint Clinical Assessments (JCAs), underlining the importance of patients’ expertise in JCAs and highlighting that patients hold essential real-world data that can strengthen these assessments. (4/8)
October 29, 2025 at 5:37 PM
💬 Later that day, Julien Delaye contributed to a session on navigating the new Joint Clinical Assessments (JCAs), underlining the importance of patients’ expertise in JCAs and highlighting that patients hold essential real-world data that can strengthen these assessments. (4/8)
💡 On Tuesday, Rosa Catro joined a keynote panel exploring the future of Europe’s Life Science Strategy, stressing the urgent need for an EU Action Plan for Rare Diseases and emphasising the opportunities prevented by the EU Life Science Strategy and the upcoming Biotech Act. (3/8)
October 29, 2025 at 5:37 PM
💡 On Tuesday, Rosa Catro joined a keynote panel exploring the future of Europe’s Life Science Strategy, stressing the urgent need for an EU Action Plan for Rare Diseases and emphasising the opportunities prevented by the EU Life Science Strategy and the upcoming Biotech Act. (3/8)
During the pre-congress workshops, Rita Francisco, spoke on accelerating rare diseases drug development. (2/8)
🗣️“If we involve all stakeholders from the start, it is an implementation booster. All IHI projects have a responsibility to show success, and success stories persuade.”
🗣️“If we involve all stakeholders from the start, it is an implementation booster. All IHI projects have a responsibility to show success, and success stories persuade.”
October 29, 2025 at 5:37 PM
During the pre-congress workshops, Rita Francisco, spoke on accelerating rare diseases drug development. (2/8)
🗣️“If we involve all stakeholders from the start, it is an implementation booster. All IHI projects have a responsibility to show success, and success stories persuade.”
🗣️“If we involve all stakeholders from the start, it is an implementation booster. All IHI projects have a responsibility to show success, and success stories persuade.”
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)
Here are the key takeaways 🧵⬇️ (1/8)
October 29, 2025 at 5:37 PM
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)
Here are the key takeaways 🧵⬇️ (1/8)