📸 One week left to enter the EURORDIS Photo Award! Share what living with a rare disease means to you and help make the rare disease experience visible worldwide.
🔗 Submit here: https://go.eurordis.org/photoaward
🔗 Submit here: https://go.eurordis.org/photoaward
January 23, 2026 at 4:49 PM
📸 One week left to enter the EURORDIS Photo Award! Share what living with a rare disease means to you and help make the rare disease experience visible worldwide.
🔗 Submit here: https://go.eurordis.org/photoaward
🔗 Submit here: https://go.eurordis.org/photoaward
Premiering at Sundance, reaching global audiences on Netflix, and receiving widespread critical acclaim, this year’s Black Pearl Award for Media & Awareness Raising goes to The Remarkable Life of Ibelin! #EURORDISAwards2026
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
January 20, 2026 at 4:15 PM
Premiering at Sundance, reaching global audiences on Netflix, and receiving widespread critical acclaim, this year’s Black Pearl Award for Media & Awareness Raising goes to The Remarkable Life of Ibelin! #EURORDISAwards2026
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
🎥 Discover this remarkable story: https://go.eurordis.org/Awardees
This year’s Black Pearl Holistic Care Award recognises the Bulgarian Huntington Association's Support Centre for Families with Rare Diagnoses and its exemplary commitment to integrated, person-centred support for our community. 🫂 #EURORDISAwards2026
👉 https://go.eurordis.org/Awardees
👉 https://go.eurordis.org/Awardees
January 12, 2026 at 4:16 PM
This year’s Black Pearl Holistic Care Award recognises the Bulgarian Huntington Association's Support Centre for Families with Rare Diagnoses and its exemplary commitment to integrated, person-centred support for our community. 🫂 #EURORDISAwards2026
👉 https://go.eurordis.org/Awardees
👉 https://go.eurordis.org/Awardees
🔔Final reminder: early-bird rates for the #BlackPearlAwards Ceremony end midnight tonight.
Secure your place at this key moment to recognise leadership, innovation and collaboration in the rare disease community. #EURORDISAwards2026
🎟️ Register now: https://go.eurordis.org/black-pearl-reg
Secure your place at this key moment to recognise leadership, innovation and collaboration in the rare disease community. #EURORDISAwards2026
🎟️ Register now: https://go.eurordis.org/black-pearl-reg
January 9, 2026 at 4:15 PM
🔔Final reminder: early-bird rates for the #BlackPearlAwards Ceremony end midnight tonight.
Secure your place at this key moment to recognise leadership, innovation and collaboration in the rare disease community. #EURORDISAwards2026
🎟️ Register now: https://go.eurordis.org/black-pearl-reg
Secure your place at this key moment to recognise leadership, innovation and collaboration in the rare disease community. #EURORDISAwards2026
🎟️ Register now: https://go.eurordis.org/black-pearl-reg
NEW: The #OpenAcademy will deliver a #Data, Ethics & #AI training for rare disease advocates!
Hybrid format: online sessions from March–July and in-person training on 14–15 September in Barcelona.
Applications open 5 January.
👉 Learn more and apply now: https://go.eurordis.org/open-academy-training
Hybrid format: online sessions from March–July and in-person training on 14–15 September in Barcelona.
Applications open 5 January.
👉 Learn more and apply now: https://go.eurordis.org/open-academy-training
January 7, 2026 at 4:01 PM
NEW: The #OpenAcademy will deliver a #Data, Ethics & #AI training for rare disease advocates!
Hybrid format: online sessions from March–July and in-person training on 14–15 September in Barcelona.
Applications open 5 January.
👉 Learn more and apply now: https://go.eurordis.org/open-academy-training
Hybrid format: online sessions from March–July and in-person training on 14–15 September in Barcelona.
Applications open 5 January.
👉 Learn more and apply now: https://go.eurordis.org/open-academy-training
In celebration of her outstanding contributions to rare genetic eye diseases and her deep commitment to the patient community, we are delighted to award the 2026 Black Pearl Scientific Award to Professor Hélène Dollfus. 🥼
Recognising excellence ⤵️
🔗 https://go.eurordis.org/BPA-2026
Recognising excellence ⤵️
🔗 https://go.eurordis.org/BPA-2026
January 5, 2026 at 4:02 PM
In celebration of her outstanding contributions to rare genetic eye diseases and her deep commitment to the patient community, we are delighted to award the 2026 Black Pearl Scientific Award to Professor Hélène Dollfus. 🥼
Recognising excellence ⤵️
🔗 https://go.eurordis.org/BPA-2026
Recognising excellence ⤵️
🔗 https://go.eurordis.org/BPA-2026
🎆 #HappyNewYear from #EURORDIS!
Thank you to our members, partners & supporters for standing with the rare disease community.
In 2026, we remain committed to empowerment, advocacy & progress for people living with a rare disease.
Thank you to our members, partners & supporters for standing with the rare disease community.
In 2026, we remain committed to empowerment, advocacy & progress for people living with a rare disease.
December 31, 2025 at 8:00 AM
🎆 #HappyNewYear from #EURORDIS!
Thank you to our members, partners & supporters for standing with the rare disease community.
In 2026, we remain committed to empowerment, advocacy & progress for people living with a rare disease.
Thank you to our members, partners & supporters for standing with the rare disease community.
In 2026, we remain committed to empowerment, advocacy & progress for people living with a rare disease.
#HappyHolidays from everyone at #EURORDIS!
As the year comes to a close, take part in the #EURORDISPhotoAward and share powerful images reflecting life with a rare disease.
📸 Explore past entries & get inspired: https://go.eurordis.org/photo-award
As the year comes to a close, take part in the #EURORDISPhotoAward and share powerful images reflecting life with a rare disease.
📸 Explore past entries & get inspired: https://go.eurordis.org/photo-award
December 24, 2025 at 8:00 AM
#HappyHolidays from everyone at #EURORDIS!
As the year comes to a close, take part in the #EURORDISPhotoAward and share powerful images reflecting life with a rare disease.
📸 Explore past entries & get inspired: https://go.eurordis.org/photo-award
As the year comes to a close, take part in the #EURORDISPhotoAward and share powerful images reflecting life with a rare disease.
📸 Explore past entries & get inspired: https://go.eurordis.org/photo-award
📸 Photo submissions for the EURORDIS-Rare Diseases Europe Photo Award 2026 are now open! This international contest invites people from around the world to visually express what it means to live with a #raredisease.
👉 Learn more and submit your photo by Jan. 30, 2026: https://ow.ly/HRqn50XMyRg
👉 Learn more and submit your photo by Jan. 30, 2026: https://ow.ly/HRqn50XMyRg
December 20, 2025 at 2:01 PM
📸 Photo submissions for the EURORDIS-Rare Diseases Europe Photo Award 2026 are now open! This international contest invites people from around the world to visually express what it means to live with a #raredisease.
👉 Learn more and submit your photo by Jan. 30, 2026: https://ow.ly/HRqn50XMyRg
👉 Learn more and submit your photo by Jan. 30, 2026: https://ow.ly/HRqn50XMyRg
Rare disease research works best when it is connected, inclusive and patient-centred. Discover how #EURORDIS is shaping #ERDERA — from national alignment to advanced therapies.
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
Joining the Dots: EURORDIS’ role in ERDERA and the reshaping of rare disease research
How EURORDIS' contributions are shaping the partnership's development.
www.eurordis.org
December 19, 2025 at 8:06 AM
Rare disease research works best when it is connected, inclusive and patient-centred. Discover how #EURORDIS is shaping #ERDERA — from national alignment to advanced therapies.
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
👉 Read the article: https://loom.ly/BApi_EQ
#RareDiseases #HealthResearch
We are proud to present this year’s #YoungPatientAdvocateAward to the Founder and President of the Aiming for the Future Foundation, Jakub Gietka. A young leader whose innovation, and dedication are transforming the future. #EURORDISAwards2026
👏 https://go.eurordis.org/Awardees
👏 https://go.eurordis.org/Awardees
December 18, 2025 at 4:19 PM
We are proud to present this year’s #YoungPatientAdvocateAward to the Founder and President of the Aiming for the Future Foundation, Jakub Gietka. A young leader whose innovation, and dedication are transforming the future. #EURORDISAwards2026
👏 https://go.eurordis.org/Awardees
👏 https://go.eurordis.org/Awardees
During last week’s High-Level Meeting, we spoke to co-host MEP Andriukaitis to explore what he hopes will be the outcomes of the conference and its resulting declaration.
For EURORDIS, the next step is clear. 👀 #ECRD2026
👉 Read more: https://go.eurordis.org/KSwE1D
For EURORDIS, the next step is clear. 👀 #ECRD2026
👉 Read more: https://go.eurordis.org/KSwE1D
December 18, 2025 at 8:01 AM
During last week’s High-Level Meeting, we spoke to co-host MEP Andriukaitis to explore what he hopes will be the outcomes of the conference and its resulting declaration.
For EURORDIS, the next step is clear. 👀 #ECRD2026
👉 Read more: https://go.eurordis.org/KSwE1D
For EURORDIS, the next step is clear. 👀 #ECRD2026
👉 Read more: https://go.eurordis.org/KSwE1D
EURORDIS welcomes the European Commission’s #BiotechAct I as a promising step for health innovation in Europe. For the 30 million people living with a rare disease, #biotechnology is key to faster diagnosis, trials and new treatments.
👉 Read more: https://go.eurordis.org/biotech-act
👉 Read more: https://go.eurordis.org/biotech-act
December 16, 2025 at 5:37 PM
EURORDIS welcomes the European Commission’s #BiotechAct I as a promising step for health innovation in Europe. For the 30 million people living with a rare disease, #biotechnology is key to faster diagnosis, trials and new treatments.
👉 Read more: https://go.eurordis.org/biotech-act
👉 Read more: https://go.eurordis.org/biotech-act
Congratulations Peyman for the identification of associations between #variants in #spliceosomal genes and the occurrence of #cleft #lip and #palate. A #complex disease and #heterogeneous underlying pathophysiology. #Radiorg #eurordis #CLP #WELRI onlinelibrary.wiley.com/journal/humu/
December 15, 2025 at 12:33 PM
Congratulations Peyman for the identification of associations between #variants in #spliceosomal genes and the occurrence of #cleft #lip and #palate. A #complex disease and #heterogeneous underlying pathophysiology. #Radiorg #eurordis #CLP #WELRI onlinelibrary.wiley.com/journal/humu/
We are proud to present the #EURORDISVolunteerAward to Allison Watson, recognising her career of remarkable leadership and ongoing, unwavering commitment to improving the lives of people living with rare epilepsies.
👏 Learn more: https://go.eurordis.org/Awardees
👏 Learn more: https://go.eurordis.org/Awardees
December 8, 2025 at 4:02 PM
We are proud to present the #EURORDISVolunteerAward to Allison Watson, recognising her career of remarkable leadership and ongoing, unwavering commitment to improving the lives of people living with rare epilepsies.
👏 Learn more: https://go.eurordis.org/Awardees
👏 Learn more: https://go.eurordis.org/Awardees
Great 2 days at #French Society of #Lymphology in Toulouse on lymphatic malformations, lymphoedema and lipedema. Illustrative presentations, pertinent questions and collegial discussions. Humbling to be part of the faculty. #vascapa #hevas #CMTC #Welbio #eshg #revamp #VASCERN #eurordis #lymph #LM
December 5, 2025 at 5:17 PM
🎤Moderating a panel Yann Le Cam, Founder & Past-CEO at EURORDIS:
“The UN and WHO have made rare diseases a global priority, adopting resolutions that call for concrete action: from diagnosis and centers of expertise to standards of care and access to innovation.”
#EHS2025 #NextGenSimplified
“The UN and WHO have made rare diseases a global priority, adopting resolutions that call for concrete action: from diagnosis and centers of expertise to standards of care and access to innovation.”
#EHS2025 #NextGenSimplified
December 2, 2025 at 2:38 PM
🎤Moderating a panel Yann Le Cam, Founder & Past-CEO at EURORDIS:
“The UN and WHO have made rare diseases a global priority, adopting resolutions that call for concrete action: from diagnosis and centers of expertise to standards of care and access to innovation.”
#EHS2025 #NextGenSimplified
“The UN and WHO have made rare diseases a global priority, adopting resolutions that call for concrete action: from diagnosis and centers of expertise to standards of care and access to innovation.”
#EHS2025 #NextGenSimplified
JOIN4ATMP at the ERDERA ATMP Workshop!
Project coordinator Annette Künkele (Charité) & Matt Bolz-Johnson (EURORDIS) contributed valuable insights on how collaborative approaches can help ensure that ATMPs meet the needs of diverse patient populations and drive innovation in rare disease therapies.
Project coordinator Annette Künkele (Charité) & Matt Bolz-Johnson (EURORDIS) contributed valuable insights on how collaborative approaches can help ensure that ATMPs meet the needs of diverse patient populations and drive innovation in rare disease therapies.
November 26, 2025 at 8:20 AM
JOIN4ATMP at the ERDERA ATMP Workshop!
Project coordinator Annette Künkele (Charité) & Matt Bolz-Johnson (EURORDIS) contributed valuable insights on how collaborative approaches can help ensure that ATMPs meet the needs of diverse patient populations and drive innovation in rare disease therapies.
Project coordinator Annette Künkele (Charité) & Matt Bolz-Johnson (EURORDIS) contributed valuable insights on how collaborative approaches can help ensure that ATMPs meet the needs of diverse patient populations and drive innovation in rare disease therapies.
Proud to partner with @eurordis for #ECRD2026, Europe’s largest patient-led rare disease event. Join us in Prague & online, 3–4 June 2026. Poster abstracts now open! 👉 www.rare-diseases.eu/posters
November 21, 2025 at 10:48 AM
Proud to partner with @eurordis for #ECRD2026, Europe’s largest patient-led rare disease event. Join us in Prague & online, 3–4 June 2026. Poster abstracts now open! 👉 www.rare-diseases.eu/posters
💜 100 days left until Rare Disease Day 2026! #ERDERA is proud to stand with partners across Europe to turn visibility into action and ensure lived experience shapes research, care and policy.
👉 Read more: https://loom.ly/ii7_OJg #eurordis
👉 Read more: https://loom.ly/ii7_OJg #eurordis
Unity in action: Rare Disease Day 2026 campaign launches with a renewed focus on equity - ERDERA
A global movement, coordinated by EURORDIS in partnership with 72 national alliances, amplifying representation and accelerate fair access to diagnosis, care and research.
erdera.org
November 20, 2025 at 1:43 PM
💜 100 days left until Rare Disease Day 2026! #ERDERA is proud to stand with partners across Europe to turn visibility into action and ensure lived experience shapes research, care and policy.
👉 Read more: https://loom.ly/ii7_OJg #eurordis
👉 Read more: https://loom.ly/ii7_OJg #eurordis
💜 #WorldPancreaticCancerDay highlights the urgent need for faster, more effective therapeutic options.
REMEDi4ALL recently co-organised a Multistakeholder Meeting with EURORDIS to explore how #DrugRepurposing can address these needs.
👉 Meeting summary: https://loom.ly/3u2fS7g
REMEDi4ALL recently co-organised a Multistakeholder Meeting with EURORDIS to explore how #DrugRepurposing can address these needs.
👉 Meeting summary: https://loom.ly/3u2fS7g
November 20, 2025 at 8:01 AM
💜 #WorldPancreaticCancerDay highlights the urgent need for faster, more effective therapeutic options.
REMEDi4ALL recently co-organised a Multistakeholder Meeting with EURORDIS to explore how #DrugRepurposing can address these needs.
👉 Meeting summary: https://loom.ly/3u2fS7g
REMEDi4ALL recently co-organised a Multistakeholder Meeting with EURORDIS to explore how #DrugRepurposing can address these needs.
👉 Meeting summary: https://loom.ly/3u2fS7g
Check out these highlights from Day 3 of the 2025
@nationalpress.bsky.social Rare Diseases Reporting Fellowship, featuring journalist Rupsa Chakraborty,
Jessie Dubief of EURORDIS, Darby Gavin of NORD +
Sarita Edwards of the E.WE Foundation.
#rarebutnotalone
www.instagram.com/reel/DRQNqK_...
@nationalpress.bsky.social Rare Diseases Reporting Fellowship, featuring journalist Rupsa Chakraborty,
Jessie Dubief of EURORDIS, Darby Gavin of NORD +
Sarita Edwards of the E.WE Foundation.
#rarebutnotalone
www.instagram.com/reel/DRQNqK_...
Rachel Jones on Instagram: "Day 3 of the National Press Foundation Rare Diseases Reporting fellowship featured powerful advice about tracking funding, collecting information about the lives of people ...
Discover the power of patient-led advocacy and leadership in shaping care, research, and policy for rare diseases, as seen through the stories of experts and families impacted by these conditions. Exp...
www.instagram.com
November 19, 2025 at 10:11 PM
Check out these highlights from Day 3 of the 2025
@nationalpress.bsky.social Rare Diseases Reporting Fellowship, featuring journalist Rupsa Chakraborty,
Jessie Dubief of EURORDIS, Darby Gavin of NORD +
Sarita Edwards of the E.WE Foundation.
#rarebutnotalone
www.instagram.com/reel/DRQNqK_...
@nationalpress.bsky.social Rare Diseases Reporting Fellowship, featuring journalist Rupsa Chakraborty,
Jessie Dubief of EURORDIS, Darby Gavin of NORD +
Sarita Edwards of the E.WE Foundation.
#rarebutnotalone
www.instagram.com/reel/DRQNqK_...
📷 “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
💡 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