📸 Earlier this year, “My Lonesome Self” by Christabelle St. Hill Gray won the EURORDIS Photo Award!
Could yours be our next winner? Submissions for 2027 are OPEN worldwide, across all rare diseases. Winners will be chosen by public vote!
👉 go.eurordis.org/submityourphoto
Could yours be our next winner? Submissions for 2027 are OPEN worldwide, across all rare diseases. Winners will be chosen by public vote!
👉 go.eurordis.org/submityourphoto
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🇪🇺 Europe has made progress on rare diseases. But the gaps remain.
Europe has already built important foundations, but these efforts cannot reach their full potential in isolation. We need a #EURareDiseasePlan.
👉 Explore the Blueprint: go.eurordis.org/PressRelease-B…
Europe has already built important foundations, but these efforts cannot reach their full potential in isolation. We need a #EURareDiseasePlan.
👉 Explore the Blueprint: go.eurordis.org/PressRelease-B…
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Today at the @Europarl_EN, MEPs and stakeholders discussed making cross-border healthcare work for patients.
Our colleague Inés Hernando called for the burden to shift from patients to healthcare systems.
👉Our Blueprint also outlines proposals for this:
eurordis.org/europes-rare-d…
Our colleague Inés Hernando called for the burden to shift from patients to healthcare systems.
👉Our Blueprint also outlines proposals for this:
eurordis.org/europes-rare-d…
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Two days of hands-on training in Paris!
At the #REMEDi4ALL Bootcamp, patient representatives explored how to identify repurposing opportunities, navigate regulatory pathways and clinical trials, and assess project funding.
👉 Learn more about REMEDi4ALL: go.eurordis.org/Remedi4all
At the #REMEDi4ALL Bootcamp, patient representatives explored how to identify repurposing opportunities, navigate regulatory pathways and clinical trials, and assess project funding.
👉 Learn more about REMEDi4ALL: go.eurordis.org/Remedi4all
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🧬 What would make rare disease clinical trials more accessible?
Your experience matters! EURORDIS & #RealiseD co-created a survey to understand barriers to participation.
🌍 Open to patients, caregivers & families in 15+ languages. 👉 go.eurordis.org/RealiseDSurvey
Your experience matters! EURORDIS & #RealiseD co-created a survey to understand barriers to participation.
🌍 Open to patients, caregivers & families in 15+ languages. 👉 go.eurordis.org/RealiseDSurvey
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✨ Some achievements deserve a night to remember! Registrations are OPEN for the 16th #BlackPearlAwards!
Join us in Brussels on 15 February 2027 to celebrate those making a difference for the rare disease community. 👉 Secure your place: go.eurordis.org/BPA2027registr…
Join us in Brussels on 15 February 2027 to celebrate those making a difference for the rare disease community. 👉 Secure your place: go.eurordis.org/BPA2027registr…
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That's a wrap on #WODC2026 in Amsterdam!
EURORDIS brought patient perspectives to discussions on innovation, earlier diagnosis and access to treatments.
🇪🇺 The message: Europe needs coordinated action through a #EURareDiseasePlan. 👉 go.eurordis.org/q0y6jc
EURORDIS brought patient perspectives to discussions on innovation, earlier diagnosis and access to treatments.
🇪🇺 The message: Europe needs coordinated action through a #EURareDiseasePlan. 👉 go.eurordis.org/q0y6jc
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📸 One photo. One story. A perspective the world needs to see!
Submissions for the EURORDIS Photo Award 2027 are OPEN! Share your rare disease story through your lens, wherever you are. Your story deserves to be seen!
👉 go.eurordis.org/submityourphoto
Submissions for the EURORDIS Photo Award 2027 are OPEN! Share your rare disease story through your lens, wherever you are. Your story deserves to be seen!
👉 go.eurordis.org/submityourphoto
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🇪🇺 How can research become a standard part of rare disease care?
🧬 Join EURORDIS & Rare Diseases Ireland on 13 Nov in Dublin or online for “Research as Care: Why Rare Diseases Matter for Europe's Future”.
👉 Register now: go.eurordis.org/rare-diseases-…
🧬 Join EURORDIS & Rare Diseases Ireland on 13 Nov in Dublin or online for “Research as Care: Why Rare Diseases Matter for Europe's Future”.
👉 Register now: go.eurordis.org/rare-diseases-…
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🇪🇺 A vision is not enough. Europe needs a plan!
🧭 The European Blueprint for Rare Diseases sets out a roadmap for a future EU Action Plan: shared goals, funding, accountability and patients as partners.
It's time to turn ambition into action. 👉 go.eurordis.org/PressRelease-B…
🧭 The European Blueprint for Rare Diseases sets out a roadmap for a future EU Action Plan: shared goals, funding, accountability and patients as partners.
It's time to turn ambition into action. 👉 go.eurordis.org/PressRelease-B…
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⏳ Hurry up! Just 11 hours left to register.
Join the 4 Nov Expert Dialogue at the European Parliament on making cross-border healthcare work better for patients.
🚨 Register by 22 Oct: go.eurordis.org/cross-border-e…
@EuropeanCancer @SIOPEurope
Join the 4 Nov Expert Dialogue at the European Parliament on making cross-border healthcare work better for patients.
🚨 Register by 22 Oct: go.eurordis.org/cross-border-e…
@EuropeanCancer @SIOPEurope
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🔬 45 years: the median time from first publication to orphan drug designation among rare diseases studied that reached this milestone.
A new #IRDiRC PLUTO study, co-authored by our colleague, exposes gaps in research and treatment development. 👉 go.eurordis.org/NewArticle
A new #IRDiRC PLUTO study, co-authored by our colleague, exposes gaps in research and treatment development. 👉 go.eurordis.org/NewArticle
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🇪🇺 Over 30 million Europeans live with a rare disease. What if research became part of their care?
🧬 Join us in Dublin on 13 November to explore how patient-led innovation can improve health outcomes and strengthen Europe.
👉 Register: go.eurordis.org/rare-diseases-…
🧬 Join us in Dublin on 13 November to explore how patient-led innovation can improve health outcomes and strengthen Europe.
👉 Register: go.eurordis.org/rare-diseases-…
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⏳ Just 2 days left to register!
Join the 4 Nov Expert Dialogue at the European Parliament on making cross-border healthcare work better for patients.
🚨 Register by 22 Oct: go.eurordis.org/cross-border-e…
@EuropeanCancer @SIOPEurope
Join the 4 Nov Expert Dialogue at the European Parliament on making cross-border healthcare work better for patients.
🚨 Register by 22 Oct: go.eurordis.org/cross-border-e…
@EuropeanCancer @SIOPEurope
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📊 We're hiring a Survey Project Manager for our Rare Barometer team!
🔎 Help turn patient experiences into evidence through research on AI, health data sharing and health economics.
📍 Paris | Hybrid | Temporary contract
👉 Apply: go.eurordis.org/work-with-us
🔎 Help turn patient experiences into evidence through research on AI, health data sharing and health economics.
📍 Paris | Hybrid | Temporary contract
👉 Apply: go.eurordis.org/work-with-us
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🇪🇺 How can rare disease research become part of routine care?
Join “Research as Care” in Dublin on 13 November to explore the #BiotechAct, patient partnerships and an EU Action Plan on Rare Diseases.
📍 Dublin | 13 Nov 👉 Register: go.eurordis.org/rare-diseases-…
Join “Research as Care” in Dublin on 13 November to explore the #BiotechAct, patient partnerships and an EU Action Plan on Rare Diseases.
📍 Dublin | 13 Nov 👉 Register: go.eurordis.org/rare-diseases-…
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🇪🇺 Today, EURORDIS launches the European Blueprint for Rare Diseases!
With 18 priority actions, it sets out the community’s vision for an EU Action Plan on Rare Diseases.
Our call to the European Commission: turn this vision into action. 👉 go.eurordis.org/PressRelease-B…
With 18 priority actions, it sets out the community’s vision for an EU Action Plan on Rare Diseases.
Our call to the European Commission: turn this vision into action. 👉 go.eurordis.org/PressRelease-B…
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⏳ Thought about applying? Maybe even bookmarked the page?
Only 3 days left to apply for the Open Academy x ERDERA Schools 2027!
📍 Barcelona | 7–10 June
⏰ Don't let the deadline make the decision for you, apply by 16 October: go.eurordis.org/OAERDERASchool
Only 3 days left to apply for the Open Academy x ERDERA Schools 2027!
📍 Barcelona | 7–10 June
⏰ Don't let the deadline make the decision for you, apply by 16 October: go.eurordis.org/OAERDERASchool
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Today at the European Parliament, the expert dialogue on the EU #BiotechAct explored stronger clinical research, non-profit innovation and better treatment access.
The call: an inclusive biotech ecosystem and an EU Action Plan on Rare Diseases. 👉 go.eurordis.org/Intergroup
The call: an inclusive biotech ecosystem and an EU Action Plan on Rare Diseases. 👉 go.eurordis.org/Intergroup
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🧬 Today at the European Parliament!
How can the #BiotechAct boost research and improve access to treatments for cancer and rare disease patients?
🔴 Follow the expert dialogue LIVE!
🕒 15:45–17:30 CEST
👉 go.eurordis.org/ExpertDialogue…
How can the #BiotechAct boost research and improve access to treatments for cancer and rare disease patients?
🔴 Follow the expert dialogue LIVE!
🕒 15:45–17:30 CEST
👉 go.eurordis.org/ExpertDialogue…
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