EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe An alliance of patient organisations improving the lives of all people living with rare diseases.

đź”— Better health data exchange could mean better research and care for people living with a rare disease. But across Euro...
21/08/2026

đź”— Better health data exchange could mean better research and care for people living with a rare disease. But across Europe, important barriers still stand in the way.

As part of the JARDIN Joint Action, a hackathon brought together 47 experts from 10 European countries to explore how existing standards, software and infrastructures could be adapted and reused to enable more effective and secure rare disease health data exchange.

A new paper, co-authored by Veronica Popa, our Digital Patient Engagement Manager, has now been published in the Data Science Journal sharing the outcomes of the hackathon and presenting approaches to improve data harmonisation, secure access and interoperability between healthcare providers, registries and European Reference Networks.

The work now moves towards further real-world evaluation and pilot testing, with the aim of informing future recommendations for health data exchange across Europe.

đź“– Read the full open-access paper: https://go.eurordis.org/jardinhackathon

👶 A baby’s chance of an early diagnosis shouldn’t depend on the country they are born in. Yet across Europe, it still ca...
20/08/2026

👶 A baby’s chance of an early diagnosis shouldn’t depend on the country they are born in. Yet across Europe, it still can.

Italy nationally screens for more than 40 conditions, whilst some EU countries screen for fewer than ten. For families, that can mean the difference between early answers and care, or years of uncertainty and preventable harm.

Earlier detection is possible. Now, stronger European cooperation could help ensure that all children can benefit from it, wherever they are born.

It’s time to move beyond a postcode lottery at birth.

đź”— Read our full article on why Europe needs a shared approach to newborn screening: https://go.eurordis.org/eurordis-newborn

18/08/2026

💊 For people living with a rare disease, the development of new therapies is only part of the challenge. But they must also be made available, accessible, and affordable – wherever someone lives.

Getting there means looking at the whole journey: from research and development to regulatory decisions, health technology assessment, pricing, reimbursement and, ultimately, access.

At EURORDIS, we work across this journey to bring the patient voice into decision-making spaces, helping to ensure that innovation translates into real access for people living with a rare disease.

🎓 Want to go deeper? Explore our Open Academy courses on market access and HTA, clinical trial ethics, and the European Medicines Agency: https://go.eurordis.org/eurordis-health-access

đź”— Learn more about our work on treatments: https://go.eurordis.org/eurordis-treatments

12/08/2026

Young people aren't just the future of the rare disease community, they're already shaping it.

This , we're celebrating the ideas, energy and leadership of young people living with a rare disease, supporting a loved one, or advocating for change.

To help even more young advocates take the next step, we're launching a brand-new webinar series for people under 30 in the rare disease community.

Across four free webinars, you'll learn how to:
🗣️ Communicate your story with confidence.
🌍 Lead meaningful change in your community.
🏛️ Navigate European advocacy and make your voice heard.
đź’™ Build resilience through sustainable advocacy and mental wellbeing.

Whether you're taking your first steps in advocacy or looking to strengthen your skills, this series is designed to help you grow your confidence, expand your impact and connect with other young people across the rare disease community.

📢 Learn more: https://go.eurordis.org/newwebinarseries

This initiative has been exclusively supported by the Stavros Niarchos Foundation (SNF) through its 30 for 30: Next-Gen Grants Initiative.

🧬 What does the EURORDIS Scientific Award really celebrate?Not just scientific excellence - but researchers who combine ...
11/08/2026

🧬 What does the EURORDIS Scientific Award really celebrate?

Not just scientific excellence - but researchers who combine groundbreaking science with a lifelong commitment to the rare disease community.

Whether through pioneering scientific breakthroughs, fostering international collaboration, involving patients throughout the research process or advancing our understanding of rare diseases, this award recognises research that goes beyond the laboratory to make a real difference.

This year, Professor Hélène Dollfus was recognised for doing exactly that. Through her pioneering work in rare genetic eye diseases, she has helped advance scientific knowledge, foster European collaboration and work hand-in-hand with patients and advocacy organisations to improve research, care and awareness.

Could the next awardee be someone in your network? Or even you..?

👉Don’t wait and nominate them/yourself today: https://go.eurordis.org/BPA2027

10/08/2026

đź’ś Living with a rare disease doesn't stop when the medical appointment ends.

It continues at work. At school. At home. In relationships. In public spaces. In every part of life.

That's why holistic care matters.

For people living with a rare disease, good care is about more than just appointments and treatments. It's about ensuring that health, social care, education, employment, psychological support, and social inclusion work together, not separately.

🎥 What does that look like in practice?

In this episode of , soprano and advocate Victoria Oruwari shares how she challenged assumptions on life with a disability after losing her sight, found empowerment through music, and built an international career, reminding us why inclusion and accessibility are essential parts of holistic care.

▶️ Watch the full episode: https://go.eurordis.org/10MWAccessibility

đź”— Learn more about EURORDIS' work on holistic care: https://go.eurordis.org/holisticcare

07/08/2026

đź©ş A diagnosis can change everything.

It can open the door to the right care, treatment, support and community. But for too many people living with a rare disease, that door stays closed for far too long.

On average, it takes five years to receive a rare disease diagnosis, with many people seeing multiple healthcare professionals before finally getting answers.

At EURORDIS, we're working to change that. We advocate for earlier, faster and more accurate diagnosis by improving access to diagnostic technologies across Europe, ensuring efficient care pathways exist to transition people from diagnosis to care, and working to guarantee an integrated, holistic approach to patients with currently undiagnosable conditions.

Here more abut the diagnosis journey firsthand. 🎧 Listen to Zainab's story: https://go.eurordis.org/rareonair

In this episode of EURORDIS , Zainab Alani shares her experience of living with myasthenia gravis, the challenges she faced before receiving a diagnosis, and how being heard, and finally believed - shaped her life and her advocacy.

đź”— Learn more about rare disease diagnosis: https://go.eurordis.org/eurordispriorities

What changes when a person living with a rare bone condition moves into adulthood, and then into later life?From the tra...
06/08/2026

What changes when a person living with a rare bone condition moves into adulthood, and then into later life?

From the transition out of paediatric care to fractures, surgery, sexual and reproductive health, and ageing, each phase brings different medical, psychological and social challenges.

The OIFE Topical Meeting, “Phases of Adult Life – with OI and other Rare Bone Conditions,” organised by Osteogenesis Imperfecta Federation Europe (OIFE), will bring together people living with rare bone conditions, healthcare professionals, researchers and industry to learn from one another, identify gaps and help shape better, more holistic adult care.

Through expert talks, workshops and discussions, participants will explore the challenges and opportunities of living with OI and other rare bone conditions across adulthood.

đź“Ť Quality Expo, Oslo, Norway
📅 9–12 September 2027

👉 Learn more: https://go.eurordis.org/tropicalmeeting

🏔️ Some mountains are climbed with ropes. Others with resilience.For decades, many women and girls affected by bleeding ...
05/08/2026

🏔️ Some mountains are climbed with ropes. Others with resilience.

For decades, many women and girls affected by bleeding disorders were told they were "just carriers", leaving countless symptoms overlooked and diagnoses delayed.

In our latest Member Comment, the European Haemophilia Consortium (EHC) explores how Project Elevate Her is helping change that narrative. Led by endurance athlete Maia Meier, the initiative is using the challenge of climbing the Seven Summits to shine a light on the women who were never counted.

Because a diagnosis doesn't just change medical care, it changes lives.

👉 Read the full article: https://go.eurordis.org/elevateher

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