Audience attentively listening at a professional conference with ECRD CPD accreditation announcement on orange background.
🎓 #ECRD2026 is CPD accredited!
Offering 12.75 hours of CPD, ECRD brings together professionals across healthcare, #research & #policy to explore the latest developments in rare diseases.
🔗 Join the conversation now: https://go.eurordis.org/register-bsky
Today is #EuropeanPatientsRightsDay ✊
For people living with rare diseases, patients’ rights mean timely diagnosis, equitable access to care, and a real voice in decisions that affect their lives.
Making this a reality requires coordinated #EU action:https://go.eurordis.org/eurordisblueprint
Text emphasizing breaking bottlenecks for a globally competitive Europe to improve patient treatments with scattered pills and blister pack on blue background.
💊 For many #raredisease patients,the challenge isn’t only the lack of treatments - it’s the long and complex journey to access one, with misaligned systems & small patient populations among factors slowing progress.
🔗 Read more: https://go.eurordis.org/rarediseasestreatments
European Parliament building with flags, promoting an event on rare diseases scheduled for April 23 at 9AM CEST.
⏳ Reminder: European Parliament Event on #RareDiseases
Join policymakers, patients, & experts to shape a future EU framework that reflects real needs.
👉 Have you registered yet? Do it by 20 April:
💻 Can’t attend in person? Join online: https://go.eurordis.org/onlineregistration
Speaker presenting with a tablet in her hands, with overlapping text: Live captioning and AI powered translation
#ECRD is committed to accessibility & inclusion! All sessions will feature live captioning + AI translation in 60+ languages.
📱 In Prague: scan a QR code to follow in your language
💻 Online: access captions directly on screen
🔗 Learn more & register: https://go.eurordis.org/register-bsky
Digital illustration of a human brain with neural pathways, highlighting AI's potential in rare disease research. With overlapping text: will artificial intelligence live up to its promises for rare diseases
Will #AI live up to its promises for #rarediseases?
In his latest article, François Houÿez explores both the potential of AI to transform diagnosis & research - and the challenges around data, trust & patient involvement.
🔗 Read more: https://go.eurordis.org/newpublication
Blue background with overlapping text: Eurpean Parliament event on rare diseases, placing patients at the centre of a future european framework
How can #Europe build a stronger, patient-centred #raredisease framework?
On 23 April, EURORDIS & MEP Nicolás González Casares bring together policymakers, patients & experts at the European Parliament.
👉 Register by 20 April: https://go.eurordis.org/parliamentevent
Group of five people engaged in a focused discussion around a table, promoting ECRD 2026 conference participation. with overlapping text: lead a discussion at ECRD 2026
Have an idea or challenge you’d like to discuss at #ECRD2026 in Prague?
Submit your topic for an opportunity to lead a small group discussion and be part of the programme.
⏳ Deadline: 17 April, 18:00 CET
📩 https://go.eurordis.org/groupECRD2026
Announcement of a new publication on telehealth's role in rare disease diagnosis, treatment, research, and education by IRDiRC.
📢 New from IRDiRC: a publication by its Telehealth Task Force explores how #telehealth can improve diagnosis, care & research for rare diseases. Based on global expert insights, it highlights both opportunities & remaining challenges.
📄https://go.eurordis.org/rarejournals
5.1 million people across Europe are living with rare cancers, highlighted by a pink map of European countries.
#RareDiseases & #RareCancers are not separate worlds - patients face similar challenges, from diagnosis to access to care.
Through the Rare Cancer Advocates Network, EURORDIS is working to improve outcomes and ensure no patient is left behind. 👉 Read more: https://go.eurordis.org/rarecancers
A man holding a microphone speaks during a conference, with overlapping text: find your tracks at ECRD 2026
Planning your participation at #ECRD2026?
Explore key tracks covering therapies, diagnosis, evidence, healthcare, reimbursement and mental health - all shaping the future of rare disease policy.
👉 Be part of the change: https://go.eurordis.org/register-bsky
Rhiannon Walls & Allison Watson against a green background with text promoting '10 Minutes with Rhiannon Walls' on April 9 at 5 PM.
⏳Our next episode of #10MinutesWith is coming up on 9 April!
Join host Rhiannon Walls for a powerful conversation with Allison Watson on advocating for people living with ultra-rare conditions.
Register on LinkedIn now to get notifications when we go live!
👉 https://go.eurordis.org/Og9TN1
Six out of ten people find managing care challenging, shown with a young man lying down and a woman busy in the kitchen.
For many people with #RareDiseases, care coordination isn’t provided - it’s expected.
📊 65% navigate multiple services
67% say providers communicate poorly
7 in 10 spend significant time organising care
Integrated care is essential. 👉 Read more: https://go.eurordis.org/integratedcare
A diverse group of professionals networking and engaging in conversations at a modern indoor event space. With overlapping text: ready to lead the conversation?
Step forward and lead the conversation at #ECRD2026!
Participants can now submit topics for interactive group discussions in Prague.
📅 3 June
📩 Submit by 17 April: https://go.eurordis.org/groupECRD2026
Close-up of a DNA double helix with a red highlight, alongside text about new webinar: listening to experiences: the impact of patient involvement in ATMP clinical trial design, 14 April
🚀 Do you want to help shape patient-centred ATMP clinical trials?
Join4ATMP is launching a new webinar series on patient involvement in trial design. Join the discussions now!
📅 14 April 2026 - 17:00–19:00 CET
👉 https://go.eurordis.org/Jointhewebinar
Eight professionals seated on stage in a panel discussion with blue and green vertical lighting behind them, conference at teh DIA Europe 2026
At #DIAEurope2026, EURORDIS highlighted a clear message: Europe’s innovation must be built with patients as partners - from data governance to fostering a culture of collaboration and using tools like regulatory sandboxes.
👉 Learn more: https://go.eurordis.org/eurordisareas
Group photo of diverse individuals, including several in wheelchairs, gathered in a bright room with large windows and a presentation screen behind them.
Last Friday, Adéla Odrihocká represented EURORDIS at the Youth Policy Dialogue with Commissioner Hadja Lahbib, raising key issues for people living with rare diseases, including employment, disability recognition & accessibility. 🔗 Read more: https://go.eurordis.org/MidReview
Audience members attentively clapping, with overlapping text: be part of the change
#ECRD2026 is approaching! 👥
On 3–4 June, the rare disease community will gather in Prague & online to connect, collaborate and shape the future of rare disease policy in Europe.
👉 Register and join the conversation: https://go.eurordis.org/register-bsky
Panel of four speakers engaged in a hybrid conference discussion on rare diseases, seated with microphones and water bottles on a table. with overlapping text: join the discussions
At #ECRD2026, three parallel tracks on 4 June, each exploring key challenges in rare disease care:
🏥 Specialised Healthcare
💊 Preparing Reimbursement Decisions
🧠 Mental Health
Explore the sessions shaping these discussions: https://go.eurordis.org/register-bsky
Data and digital health are transforming #rarediseasecare.🧬
From Electronic Health Records to safe telemedicine and better data sharing, EURORDIS is working to improve diagnosis, research and access to care across Europe. 👉 Learn more about our work: https://go.eurordis.org/DigitalHealth
A young child in a floral hat and pink sweater sits outdoors by a river, highlighting the 5-year average wait for rare disease diagnosis.
🧬 It takes on average 5 years to diagnose a #raredisease. 70% of patients wait more than a year after first seeking medical attention. #Diagnosis should not depend on where you live. Earlier, equitable access to diagnosis must be the standard. 🔗https://go.eurordis.org/rare-disease-diagnosis
Audience attentively listening at a conference, with overlapping text saying: be part of the action.
At #ECRD2026, three parallel tracks on 3 June will explore key rare disease challenges:
🔬 Therapies & medical devices
🧬 Diagnosis, research & prevention
❤️ Evidence-based holistic care
Discover the sessions shaping these discussions: https://go.eurordis.org/ecrd-postersbluesky
To mark #RareDiseaseDay 2026, the short film of our global #RaisingYouthVoices2026 event was released! 🎥
Learn more about the issues that are driving young members of our community to fight for a more equitable future.⬇️
Close-up of the 15th Black Pearl Awards trophies with a purple background and event branding.
Two women embrace warmly on stage during the EURORDIS Black Pearl Awards ceremony with a man in a tuxedo standing nearby.
Musician playing saxophone on stage at Eurodis Black Pearl Awards with purple lighting and seated audience.
Person seated at a table with wine bottles and glasses, reading a photo album from the Eurordis Black Pearl Awards ceremony.
✨ Relive the 15th #BlackPearlAwards through the moments that shaped the evening!
From inspiring speeches to celebrating this year’s awardees, the night honoured leadership and innovation in the rare disease community. 📸 Explore the photo gallery: https://go.eurordis.org/BPA
🚀 Today marked the kick-off of the European Regional Task Force on Rare Diseases!
This group will help shape a European Blueprint & contribute to the Global Action Plan. Learn more 👉 https://go.eurordis.org/regional-task-force
A European Union flag is seen flying against a blue sky.
We welcome the draft report presented by MEP Nicolás González Casares calling on the European Commission to propose legislation establishing a European Rare Disease Action Framework. 🇪🇺 #ActRare
👉 Read our full statement: https://go.eurordis.org/ppXcoG
A European Union flag is seen flying against a blue sky.
We welcome the draft report presented by MEP Nicolás González Casares calling on the European Commission to propose legislation establishing a European Rare Disease Action Framework. 🇪🇺 #ActRare
👉 Read our full statement: https://go.eurordis.org/ppXcoG
A woman stands on stage giving a presentation from a lectern to a crowded auditorium. An illustration of a man running into the sunset on a running track with an elevated path shows the words "Join The Momentum".
Five years after the Rare2030 recommendations and one year after the WHA called for a Global Action Plan, rare disease policy is both a moral imperative and a strategic investment.
Be part of this momentum. 👉 https://go.eurordis.org/register-bsky
Rows of colourful wooden human figures arranged in a pattern on a white surface, symbolising diversity and community.
France has today sent a non-paper to @ec.europa.eu calling for the reintroduction of operating grants under EU4Health from 2026. 🇪🇺
We, together with fellow members of the #EU4Health Civil Society Alliance, reiterate our call them to be reinstated.
Read the full statement 👉 go.eurordis.org/SVbzsn
For Kostiantyn, #RareDiseaseDay’s message More Than You Can Imagine means more access.
Living with a rare disease in Ukraine meant navigating not only his condition, but barriers to treatment and support. 🎥 Watch his story!
