EURORDIS-Rare Diseases Europe

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EURORDIS-Rare Diseases Europe

An alliance of patient organisations improving the lives of all people living with rare diseases.

11/10/2026

This November, the rare disease community is coming together in Dublin – and there’s still time to register!

On 13 November, Rare Diseases Ireland will bring together rare disease advocates, researchers, policymakers and other stakeholders to explore how research and innovation can be embedded into standard rare disease care.

The conversation will explore what is needed to make that happen, looking at the momentum towards an EU Action Plan for Rare Diseases, the role of the Biotech Act, and how meaningful patient partnership can be embedded throughout research and innovation.

🤝 It will also be an opportunity to meet, exchange perspectives and ensure that the experiences and priorities of people living with rare diseases are part of the discussions shaping what comes next.

Want to be part of the conversation on the future of rare disease research and innovation in Europe? 👉 Join us in Dublin: https://go.eurordis.org/rare-diseases-event

Debra Ireland - The Butterfly Skin Charity Irish Platform for Patient Organisations, Science, Industry Neurological Alliance of Ireland (NAI) NCBRS Worldwide Foundation

10/10/2026

💊 A promising idea for drug repurposing is one thing. Knowing how to move it forward is another.

How do you identify the right opportunity? What makes a repurposing project worth pursuing? And how can patient organisations help shape the journey towards patient access? 🤔

These are some of the questions participants will tackle at the REMEDi4ALL Repurposing Bootcamp for Patient Representatives.

This June in Barcelona, you’ll explore how to identify promising concepts, contribute as an active partner, build a strategy, explore funding options and tackle common bottlenecks, through real-world cases, expert insights, and discussions with fellow patient representatives.

🎓 Already thinking of joining the Open Academy x ERDERA Schools 2027? The Bootcamp takes place immediately afterwards, offering an opportunity to extend your time in Barcelona and dive deeper into drug repurposing. You can apply to both trainings, but separate applications are required and joint acceptance is not guaranteed.

📍 Barcelona | 10–11 June 2027
⏰ Applications close 16 October

Interested in being part of it? Apply now: https://go.eurordis.org/Remedi4allTraining

10/10/2026

🧠 This , we’re once again putting the spotlight on a reality that too often remains unseen: the psychological impact of living with a rare disease, or caring for someone who does.

Our latest Rare Barometer survey, with almost 10,000 participants across Europe, shows the scale of the challenge: 7 in 10 people living with rare diseases and their families report poor mental health.

And getting help isn’t always easy. 55% of people living with rare diseases report barriers to accessing professional psychological support.

Mental health support should not be separate from rare disease care. It needs to be recognised, accessible and integrated throughout the care journey, for both people living with a rare disease and their families.

On , we’re calling for mental health to be systematically integrated into rare disease care.

👉 Discover our Rare Barometer findings: https://go.eurordis.org/RareBarometerResults

09/10/2026

Today, we held the 42nd Workshop of the EURORDIS Round Table of Companies (ERTC) in Barcelona! 🤝

Under the theme “Beyond Treatment: Integrating Quality of Life, Mental Health and Patient Experience into Rare Disease Research and Therapeutic Development,” the workshop brought together stakeholders from across the rare disease ecosystem to explore how patient priorities and experiences can be better integrated into research, therapeutic development and delivery.

Throughout the day, discussions focused on:

🔬 Advancing patient-led research – aligning research priorities and funding with patients' needs.

✅ Reducing practical barriers to clinical trials – making participation more accessible and patient-centred.

🧠 Addressing the emotional burden of trials – strengthening communication and psychological support.

📊 Recognising invisible symptoms – ensuring clinical trial outcomes better reflect patients' experiences, informed by our Rare Barometer findings.

The workshop offered an important opportunity for industry leaders to exchange perspectives on making rare disease research and therapeutic development more patient-centred, while considering both the practical and psychological dimensions of clinical trial participation.

Thank you to all our speakers and participants for sharing their expertise and contributing to these discussions!

👉 Explore our latest Rare Barometer findings: https://go.eurordis.org/RareBarometerResults

08/10/2026

🇪🇺 Last June, more than 800 people from 55 countries came together at ECRD 2026. Under the theme “Rare Diseases in a Changing & Competitive Europe,” one message stood out: investing in rare disease research and innovation can both improve people’s lives and simultaneously strengthen Europe’s competitiveness in biotechnology, precision medicine and life sciences.

As our President, Avril Daly, gave the closing remarks:

🗣️ “From Prague, we leave with a very clear message. The momentum is here. The community is united. The tools and the knowledge exist. What we must now match them with is sustained political will, coordination, and investment in that action. We will not stop until every person living with a rare disease in Europe can access the diagnosis, care, and treatment that they deserve.”

Today, we’re publishing the ECRD 2026 Executive Summary, capturing the priorities and conclusions that emerged, including stronger diagnosis and care pathways, sustainable investment in research and infrastructure, better-connected data, meaningful patient involvement and broad support for a European Action Plan on Rare Diseases.

▶️ Take a look back at in our video, and discover what came out of it.

👉 Read the Executive Summary: https://go.eurordis.org/ECRDExecutiveSummary

06/10/2026

💬 What could six months of having the right person in your corner unlock for your advocacy?

Maybe you’re trying to grow a patient organisation, influence policy, secure funding, get involved in research or simply become more confident in your own leadership.

The Open Academy x ERDERA Mentoring Programme gives you dedicated, one-to-one support to work through the challenges and goals that matter most to you.

You’ll be matched with a mentor based on where you want to grow, then meet virtually once a month for six months – giving you the space to ask questions, test ideas, tackle challenges and learn from someone with relevant experience.

🎯 Your goals. Your questions. Your mentor.

📅 December 2026 – May 2027
💻 1 hour a month, online
⏰ Applications close 10 October - Apply now: https://go.eurordis.org/MentoringProgramme

06/10/2026

⏳ 10 days left to apply for the Open Academy x ERDERA Schools 2027!

Next June, participants will come together in Barcelona for four days of learning, exchange and collaboration – with patient advocates and early-career researchers learning alongside one another.

Whether your interest lies in Medicines Research & Development or Scientific Innovation & Translational Research, the Schools offer something that goes beyond the training itself: the opportunity to meet people working across rare disease research, exchange perspectives and build connections that can become collaborations which continue long after Barcelona.

⏰ If the Open Academy x ERDERA Schools have been on your radar, now is the time to submit your application: https://go.eurordis.org/OAERDERASchool

05/10/2026

🚨 Tomorrow’s the day! Ready to move from having ideas to making them happen?

Our next webinar is for young advocates who want to take a bigger role, bring others on board and start creating change – without needing to have it all figured out first!

Join Zhana Chokheli, Ida Mirkovic Knaus and Lauren Roberts for an honest, practical conversation about stepping into leadership and finding your own way to lead.

📅 Tomorrow, 6 October
💻 Online & free
⏰ Last chance to register: https://go.eurordis.org/advocacy-webinar

Exclusively supported by the Stavros Niarchos Foundation (SNF) through its 30 for 30: Next-Gen Grants Initiative.

05/10/2026

🎙️ A new episode of ERNS on Air has just landed!

In this brand new episode, Ruth Biller, patient advocate and ePAG Lead in ERN GUARD-Heart, alongside Lia Crotti, clinician in ERN GUARD-Heart, join host Nora Lázaro, our ERN and Healthcare Patient Engagement Manager, to share the story behind the Sudden Cardiac Death Letter: a patient-led resource co-created to support families.

Together, they explore how lived experience shaped the important initiative, what made this patient-clinician collaboration work, and how the resource can be adapted and translated to reach more families across Europe in their hour of need.

🎧 Tune in to our latest ERNs on Air: https://go.eurordis.org/ERNsPodcastEp

02/10/2026

🇪🇺 When the expertise you need exists elsewhere in Europe, crossing a border shouldn’t become another barrier to care.

For people living with rare diseases and cancers, accessing highly specialised care can mean looking beyond their own country. Yet administrative complexity, financial burdens and delays can still stand in the way.

On 4 November, the European Parliament Intergroup on Cancer and Rare Diseases and Giorgos Georgiou MEP will convene an Expert Dialogue bringing together MEPs, healthcare professionals and patient representatives.

The discussion will explore how Europe’s cross-border healthcare framework can better meet patients’ needs, including through improved access to specialised expertise, European Reference Networks, clinical trials and innovative treatments.

📅 4 November | 10:00–11:45
📍 European Parliament, Brussels

Interested in joining the conversation? Register here: https://go.eurordis.org/expert-dialogue

European Cancer Organisation SIOP Europe, the European Society for Paediatric Oncology - SIOPE

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