Our latest review, 'Current and Emerging Pharmacotherapies for Vascular Malformations', is online. First 50 can download the PDF for free via the link. Thank you, Emmanuel Seront, for putting it together! #VASCAPA #HEVAS #CMTC #VASCERN #RADIOORG #EURORDIS #EVBO
www.tandfonline.com/eprint/QGPRV...
Our latest review, 'Current and Emerging Pharmacotherapies for Vascular Malformations', is online. First 50 can download the PDF for free via the link. Thank you, Emmanuel Seront, for putting it together! #VASCAPA #HEVAS #CMTC #VASCERN #RADIOORG #EURORDIS #EVBO
www.tandfonline.com/eprint/QGPRV...
What a great #VASCERN-VASCA meeting. Thank you Roberta, Thi-Mai et Treasure for organisation. And all those who presented steps made forward in various task forces. Looking forward to follow-up of all action points. #vascapa #hevas #cmtc #vascern #radiorg #eurordis
www.facebook.com/100069557370...
What a great #VASCERN-VASCA meeting. Thank you Roberta, Thi-Mai et Treasure for the organisation, and all those who presented steps made forward in task forces. Looking forward to the follow-up of all action points. #vascapa #hevas #cmtc #vascern #radiorg #eurordis
www.facebook.com/100069557370...
⏳ Las week to submit your Poster Abstract for #ECRD! Submitting a Poster Abstract offers the opportunity to have your work considered for presentation and visibility within the wider rare disease community.
📢 Submit before 6 March: https://loom.ly/LUHeNd0
#RareDiseases #EURORDIS
It was a great annual #Crick #Rare Disease Conference 2026. Learned so much new, made novel contacts, and of course, discussed #precision #therapies for #vascular, and more specifically, #lymphatic anomalies. Organised by @Veronica K. #VASCERN #vascapa #hevas #eurordis #CMTC
Illustration of a figure running along an orange path overlaid on technical blueprints, promoting a call for interest in the European Regional Taskforce on Rare Diseases.
📢 Reminder: Expressions of Interest close 26 February!
#EURORDIS is launching a European Regional Task Force to help shape a European Blueprint for Rare Diseases and inform policy discussions ahead of #ECRD2026.
Learn more & apply: https://go.eurordis.org/regional-task-force
Our 6 FINALISTS are here… but who will win? 👀
🗳️ Voting for the #EURORDIS Photo Award 2026 is officially OPEN!
🔗 Vote now & help us crown the winners on 24 Feb 2026: www.eurordis.org/black-pearl-awards/photo...
The VAS European Book on Angiology/Vascular Medicine
(ISBN: 978-3-031-82232-2) is now published accessible in print and online ! #VASCAPA #HEVAS #CMTC #VASCERN #EURORDIS
🌟 The Black Pearl Awards highlight outstanding leadership, collaboration, and innovation across the rare disease community, celebrating those whose work is driving meaningful change in Europe and beyond. 🔗 Join the event in person or online! https://loom.ly/jQKWOfY #EURORDIS #RareDiseases
Call for interest to join the European Regional Taskforce focused on the Blueprint for Rare Diseases initiative.
#EURORDIS is launching a European Regional Task Force to assist our development of a new European Blueprint for Rare Diseases. Expressions of interest are open to patient organisations, alliances & stakeholders.
📖Are you interested in joining? Learn more! https://www.eurordis.org/
Progress in rare diseases depends on shared knowledge 🔬
As ECRD 2026 partners, ERDERA invites you to submit your abstract and help shape future rare disease care 🤝 🔗 https://loom.ly/pZztyoc #ECRD2026 #EURORDIS #RareDiseases
Large group of diverse professionals smiling and waving inside a modern building with a balcony and glass walls.
🎆 #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.
Father and son share a warm moment wrapped in glowing string lights in front of a decorated Christmas tree.
#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
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
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/
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
What a great session at the #BRAIN 2025 in London on fast-flow vascular malformations in the brain. Intense discussions and data sharing. Humbling to be part of the faculty. #vascapa #hevas #CMTC #Welbio #eshg #revamp #VASCERN #eurordis #Radiorg
💜 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
Two conference attendees discuss scientific posters displayed on boards in a bright, modern venue during a research event. ECRD 2026
💡 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
Row of sleek star-shaped trophies on a table under purple lighting for the EURORDIS Black Pearl Awards 2026.
💎 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
“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.”
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
Een persoon vult met een pen een vragenlijst in op papier aan een tafel. Onderaan de afbeelding staat een blauwe balk met de tekst: “Vragenlijst: leven met een zeldzame aandoening” en het RZN-logo.
Wat helpt mensen met een zeldzame of niet-gediagnosticeerde aandoening om goed te leven? EURORDIS, de Europese koepelorganisatie voor mensen met zeldzame ziekten, wil dat graag weten.
reumazorgnederland.nl/vragenlijst-...
#reuma #zeldzameaandoeningen #chronischziek #eurordis
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.
🎉 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...
Managing a rare disease is not only about the clinical aspects — the psychological and emotional impact is just as significant. To address these challenges, @eurordis.bsky.social has developed the Mental Health & Wellbeing Toolkit: mhtoolkit.eurordis.org#tools-resour...
#PKDInternational #EURORDIS
#WODC2025 inspiring key note about Europe‘s life science strategy ✨
#innovation #research #takeda #norgine #europeancommission #eurordis
📣 Applications are now open! #EURORDIS Open Academy applications open today for the Medicines R&D and Scientific Innovation Schools.
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
📣 Applications are now open! #EURORDIS Open Academy applications open today for the Medicines R&D and Scientific Innovation Schools.
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
Applications open soon! From 25–28 May 2026, Barcelona hosts the #EURORDIS Open Academy Schools 🧑🎓
📣 Applications open: 8 Sept 2025
🔗 More info at https://loom.ly/uZ0Iz8M
Know someone who’d love this? Repost and spread the word! 🔁
#RareDisease #OpenAcademy #ERDERA
📢 Coming in May 2026: #EURORDIS Open Academy in Barcelona!
Applications open 8 Sept 2025 for the Medicines R&D and Scientific Innovation Schools.
🎓 80 fully funded spots via #ERDERA
🧪 Hands-on sessions
🤝 Network with advocates & researchers
🔗 https://loom.ly/oK6lwVI #RareDiseases
