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.

đź“Š Can you turn data into evidence that drives change for people living with rare diseases? We're hiring a Survey Project...
17/10/2026

đź“Š Can you turn data into evidence that drives change for people living with rare diseases? We're hiring a Survey Project Manager to join our Rare Barometer team!

Our Rare Barometer surveys capture the experiences of thousands of people living with rare diseases and their families, turning their perspectives into evidence that informs research, policy and advocacy.

🔎 In this role, you'll help lead our ongoing survey on AI and health data sharing, from fieldwork and statistical analysis to communicating findings that can make a difference. You'll also contribute to health economics research.

We're looking for someone with a strong background in quantitative research, survey methodology and data analysis, who can translate complex findings into clear, meaningful insights.

đź“Ť Paris, France | Hybrid
đź“„ Full-time temporary contract (minimum 6 months), with a consultancy option for experienced profiles.

👉 Do you think this could be you? Apply here: https://go.eurordis.org/work-with-us

🇪🇺 What would it take to make research and innovation a standard part of rare disease care across Europe?On 13 November ...
16/10/2026

🇪🇺 What would it take to make research and innovation a standard part of rare disease care across Europe?

On 13 November in Dublin, this question will be at the centre of “Research as Care: Why Rare Diseases Matter for Europe's Future,” an Associated Event of Ireland’s Presidency of the Council of the European Union, co-organised by Rare Diseases Ireland and EURORDIS.

The programme will bring together three key European policy priorities:

🧬 The Biotech Act – exploring how Europe can strengthen its innovation ecosystem and translate scientific advances into patient benefit.

🤝 Research as a standard of care – examining how patient partnerships can make clinical research more accessible and relevant.

🇪🇺 A European Action Plan on Rare Diseases – discussing how the European Blueprint can support a more coordinated approach across countries.

Don’t miss this important discussion drawing the line between rare disease research, patient priorities and Europe's wider innovation agenda.

đź“Ť Dublin, Ireland | 13 November 2026

👉 Registration is open! Secure your place: https://go.eurordis.org/rare-diseases-event

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

🇪🇺 Europe has the expertise, networks and research infrastructure to transform the lives of people living with rare dise...
15/10/2026

🇪🇺 Europe has the expertise, networks and research infrastructure to transform the lives of people living with rare diseases. What it needs now is a coordinated plan to bring them together.

Today, EURORDIS launches the European Blueprint for Rare Diseases, setting out the rare disease community’s proposals for a future EU Action Plan on Rare Diseases.

Co-created over ten months with patients, clinicians, researchers, public authorities and industry, the Blueprint puts forward 18 priority actions across six critical areas: diagnosis, specialised healthcare, integrated care and social inclusion, data, research, and access to medicines and medical devices.

Our call is clear: the European Commission must bring forward an EU Action Plan that turns these priorities into coordinated, measurable action, with dedicated resources and patients as partners in its governance. Through 18 priority actions, this Blueprint builds on what Europe has already achieved, aims to close persistent gaps and ensure progress reaches people living with rare diseases across Europe.

📢 Read our press release and discover the Blueprint: https://go.eurordis.org/PressRelease-Blueprint

13/10/2026

⏳ You've thought about applying. You've looked at the programme. But still haven't submitted your application? Now there are just 3 days left to make it happen.

Applications for the Open Academy x Erdera Schools 2027 close on 16 October, and this is YOUR FINAL chance to put yourself forward for next June's training in Barcelona.

Whether your interests lie in Medicines Research & Development or Scientific Innovation & Translational Research, this is an opportunity to take a more active role in shaping the future of rare disease research.

And if you've been waiting until you feel ready to take that next step, perhaps applying is where it all starts!

📍 Barcelona | 7–10 June 2027
⏰ Three days left. Don't let the deadline make the decision for you.

👉 Submit your application now: https://go.eurordis.org/OAERDERASchool

🇪🇺 Today at the European Parliament, an Expert Dialogue on the EU Biotech Act addressed a critical challenge: ensuring E...
12/10/2026

🇪🇺 Today at the European Parliament, an Expert Dialogue on the EU Biotech Act addressed a critical challenge: ensuring Europe's biotechnology ambitions deliver real benefits for patients.

Convened by MEP Stine Bosse, member of the European Parliament Intergroup on Cancer and Rare Diseases, and co-hosted with MEP Andriukaitis, the event explored how the proposed Act can strengthen clinical research, foster innovation and improve treatment access.

For the rare disease community, the stakes are high: over 30 million people in Europe live with a rare disease, diagnosis takes five years on average, and more than 90% of rare diseases have no treatment.

🏡 Sebastian Honore shared the lived experience of a family affected by a rare disease, highlighting not only the challenges they face but also the resilience and innovative thinking that drive his family the search for a cure for their son Walther.

🔬 AFM-telethon Téléthon built on this perspective, emphasising the vital role of non-profit organisations in conducting high-value research that strengthens Europe’s biotech sector, and calling for measures to address the specific challenges these organisations face.

🗣️ Our CEO, Jean Saslawsky, relaunched the points previously raised and stressed that Europe's competitiveness and patients' needs must advance together, highlighting three priorities: supporting non-profit developers, building on existing European research infrastructures and recognising patients as equal partners in innovation.

What needs to happen next? An inclusive biotech ecosystem, alongside a European Action Plan on Rare Diseases to connect innovation with healthcare systems, improve data use and translate EU ambitions into national action.

Learn more about the Intergroup, of which EURORDIS is a member of the Secretariat: https://go.eurordis.org/Intergroup

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

🧬 Happening today at the European Parliament: How can the EU Biotech Act deliver for people living with cancer and rare ...
12/10/2026

🧬 Happening today at the European Parliament: How can the EU Biotech Act deliver for people living with cancer and rare diseases?

This afternoon, the European Parliament Intergroup on Cancer and Rare Diseases, together with MEP Stine Bosse, will bring experts together in Brussels to explore how Europe can strengthen biotechnology research while ensuring patients benefit from faster, more equitable access to innovative treatments.

Discussions will cover clinical research, cross-border collaboration, advanced therapies and inequalities in access, with recommendations for policymakers as the EU Biotech Act takes shape.

đź”´ Can't join us in Brussels? Follow the discussion live!
🕒 Today, 12 October | 15:45–17:30 CEST
👉 Watch the livestream: https://go.eurordis.org/ExpertDialogueLivestream

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

This November, the rare disease community is coming together in Dublin – and there’s still time to register!On 13 Novemb...
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

đź’Š A promising idea for drug repurposing is one thing. Knowing how to move it forward is another.How do you identify the ...
10/10/2026

đź’Š 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

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

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