EURORDIS-Rare Diseases Europe

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!

Webinar on amplifying patient voices and improving access to essential treatments on March 4, 15:00-16:00 CET by EURORDIS. Moderated by Francois Houyez, EURORDIS Director of Treatment and Access

📢 New Webinar on how can patient groups help safeguard access to essential treatments?

Join us 4 March, 15:00–16:30 CET (online) to learn how to engage in consultations & ensure critical medicines remain available for people living with a rare disease.🔗https://go.eurordis.org/register-now

As #RareDiseaseDay approaches, Shum, a young advocate shares what More Than You Can Imagine means to him: Harmony. 🎶

Living with a rare disease, he sees the community like music - every person is a voice. And only together can we create true harmony.

🎥 Watch his story

A man speaks into a microphone as 2 fellow panelists look on behind him.

A full auditorium of people seated at round tables.

Two people stand deep in discussion during a conference coffee break. The woman smiles at the man.

People seated at round tables clap.

Today we held the 41st Workshop of the EURORDIS Round Table of companies (ERTC). 🤝

Thank you to all our speakers and participants for contributing to a thoughtful and forward-looking exchange! @ec.europa.eu @ema.europa.eu

👉 Learn more about today's discussions: go.eurordis.org/ERTC41

✨ That’s a wrap on the 15th #EURPRDISAWARDS2026!

Tonight in Brussels and online, we celebrated leaders driving change in the rare disease community.

Congrats to all our awardees! 🎥 https://go.eurordis.org/BPA2026

A dining hall has been light purple for the EURORDIS Black Pearl Awards.

⚫ Today is the day! The 15th #BlackPearlAwards take place tonight, celebrating leadership and impact in the rare disease community!

Tune in live at 8pm to show your support for the people working to build a better future for the rare disease community.🎥 https://go.eurordis.org/register

Two professionals engaged in a serious discussion. With overlapping text: mental health

At #ECRD2026, the Mental Health track will address the often overlooked psychological & social challenges of rare conditions, highlighting gaps in care, research & policy - and the need for integrated, patient-centred approaches across Europe. 👉 https://go.eurordis.org/register-in

Two women seated on stage discussing reimbursement decisions at a conference with framed photos of landmarks behind them.

At #ECRD2026, the Preparing Reimbursement Decisions track will explore how Europe can prepare for the inclusion of orphan medicines in the EU #HTAR framework, building on lessons from oncology and ATMPs to support fairer access to treatments. 👉 https://go.eurordis.org/register-in

#Europe is entering a new chapter in rare disease policy.

Through the #EuropeanRegionalTaskForce, we aim to ensure the rare disease community has a clear and striking voice in shaping the European Blueprint for Rare Diseases.

⏳ Apply by 26 Feb: https://go.eurordis.org/regional-task-force

Attendees networking and discussing at a professional conference, with overlapping text: submit your poster abstract

⏳Deadline is approaching - Poster Abstract submissions close on 6 March!
Submit your poster abstract for review by the #ECRD Poster Committee. Accepted posters will feature in the virtual showcase, with onsite display for registered representing authors.👉 https://go.eurordis.org/posters-ecrd-bluesky

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

ECRD 2026 offers live captioning and AI translation in over 60 languages for rare disease conference in Prague and online.

Attending #ECRD2026 on 3–4 June? 👀
Live captioning and AI-powered translation will be available throughout the event, with real-time access in 60+ languages.
Learn more & register: https://go.eurordis.org/register-in

Four diverse individuals, some in wheelchairs, pose confidently against a blue background with colorful confetti and Rare Disease Day 2026 text.

On 28 Feb 2026, #RareDiseaseDay unites communities worldwide. More than awareness, it’s a movement for equity, inclusion & collective action for people living with a rare disease. 👉 Read the article & see how to get involved: https://go.eurordis.org/rdd-2026

Musician holding a French horn, showing Felix Klieser's live solo performance at the EURORDIS Black Pearl Awards 2026.

This year’s #BlackPearlAwards welcomes Felix Klieser🎺
Born without arms, he began playing French horn at 5 and became an internationally acclaimed soloist. His artistry is powerful, and truly distinctive. We can’t wait to share this moment with you: https://go.eurordis.org/black-pearl-reg

Three professionals engaged in a panel discussion with overlapping text: specialised healthcare

At #ECRD2026, the Specialised Healthcare track will explore how health systems can ensure timely, equitable access to expert care for rare & complex conditions, drawing on #Rare2030 recommendations to inform stronger policies across Europe. 👉 https://go.eurordis.org/register-in

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: https://www.eurordis.org/black-pearl-awards/photo-award/EURORDIS

In collaboration with the members of our Social Policy Action Group (SPAG), we have responded to the midterm review of the European Strategy for the Rights of Persons with Disabilities to help ensure the inclusion of all voices in the review.

Full response 👇
https://go.eurordis.org/tvRhTw

💊 Access to rare disease treatments remains unequal across #Europe. At EURORDIS, we advocate for therapies that are accessible, affordable & available for all patients, and for a stronger EU pathway from development to access.

📖 Learn more: https://go.eurordis.org/treatments

"Share your work now!" Features a photo of 2 people deep in conversation at a conference, an illustration of a man on a running track to represent the conference theme (competitiveness), and a banner with the key ECRD info: 3 & 4 June, Prague.

⏰ Poster Abstract submissions for #ECRD2026 close on 6 March!

All accepted posters will be featured in the virtual exhibition and top-scoring posters will be selected for a live Poster Pitch Session.

👉 https://go.eurordis.org/ecrd-postersbluesky

Award announcement for Roche and King's College London as project leads in patient engagement for AIMS-2-TRIALS by EURORDIS Black Pearl Awards.

We are proud to present the 2026 EURORDIS Company Award for Patient Engagement to Roche, in partnership with King’s College London, for their commitment to involving patients as equal partners in the AIMS-2-TRIALS consortium. #EURORDISAwards2026

🤝 Learn more: https://go.eurordis.org/Awardees

Two professionals in a discussion at a table during the 13th European Conference on Nard Diseases and Orphan Products in Prague.

At #ECRD2026, the Evidence-based Holistic Care track will explore integrated clinical, psychological & social support, patient involvement in research, and how evidence can better shape policies across Europe. 👉 https://go.eurordis.org/Awardees

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/

Panel of speakers on stage at the Raising Youth Voices event in Barcelona

Wrapping up #RaisingYouthVoices in Barcelona!✨
Today brought together youth advocates and Regional representatives from around the world to share perspectives, exchange ideas & highlight priorities shaping the rare disease community’s future. 🎥 Replay: https://go.rarediseaseday.org/livestream

Couple sharing a happy moment outdoors, framed by a floral wreath with soft natural lighting.

#WorldCancerDay 🎗️ reminds us that rare cancers must not be overlooked. Patients face delayed diagnosis, limited expertise, and unequal access to care. Our Rare Cancer Advocates Network works to raise visibility and drive progress. 🔎: https://go.eurordis.org/rare-cancers

Eurordis Black Pearl Award for Health Technology presented to Saventic Health on a pink background.

We are pleased to present the EURORDIS Company Award for Health Technology to Saventic Health, recognising its pioneering use of artificial intelligence to support timely and accurate diagnosis for people living with rare diseases. #EURORDISAwards2026

💡 Learn more: https://go.eurordis.org/Awardees

Doctor in white coat writing on clipboard with text about new publication on rare disease evidence evaluation.

📢 New publication by Matt Bolz-Johnson, based on work during his time at EURORDIS: Evidence evaluation in rare disease guidelines: a methodological perspective. The paper looks at how GRADE can be adapted for rare diseases using real-world data & expert input.
🔗 https://go.eurordis.org/article