🧬 For millions of people living with rare diseases, getting a diagnosis is the first step towards care and support. This #GeneticTestingActionDay, we highlight the role of genetic testing in shortening the rare disease diagnostic odyssey. 🔗 Learn more: https://go.eurordis.org/testingday

For women living with #SMA, pregnancy is becoming a reality. But this alone isn't enough. Our latest Member Comment from SMAFinland explores why medical progress must be matched by coordinated care and support. 👉 https://go.eurordis.org/smarpregnancy

Doctors told Romain Alderweireldt his son Aurélien might only live another 5 months. That experience led to GEMS-App, an innovative tool for advancing rare disease research & winner of the #ECRD2026 Poster Pitch Competition. Read their story 👉https://go.eurordis.org/eurorordisnews

🤝 New name, broader vision. Formerly the Company Award for Patient Engagement, the EURORDIS Patient Partnership in Medicines Development celebrates collaborations placing rare disease patients at the heart of medicines development. 👉 https://go.eurordis.org/BPA2027

Rare diseases are driving Europe’s biotech innovation. In The European Files' special edition, “Revolution: Europe’s Quest for Health Sovereignty”, EURORDIS President Avril Daly explains why the Biotech Act must put patients at its heart. 🔗 Read more: https://go.eurordis.org/euhealthbuild

7 in 10 people living with a rare disease, or caring for someone who does, report poor mental health, a level comparable to the height of the pandemic. The difference is that for the rare disease community, this is not a passing crisis. #RareBarometer 👉 Full story: https://go.eurordis.org/eWwzfI

The EURORDIS Members Award celebrates EURORDIS member patient organisations developing innovative approaches to patient support and advocacy. #EURORDISAwards2027 Recognise their impact. Nominate now: 👉 https://go.eurordis.org/BPA2027

New resource 📘 This practical guide supports ERN Coordinating Teams in building meaningful patient partnerships, with tools and actions that can benefit healthcare organisations far beyond the ERNs. Learn more 👉 https://go.eurordis.org/ernguide

💡 The right technology can change the rare disease journey. The #EURORDISAwards2027 Company Award for Health Technology celebrates companies developing innovative solutions that improve diagnosis, care and quality of life. 👉 Nominate now: https://go.eurordis.org/BPA2027

🌟 Who will be the next EURORDIS #BlackPearlAwards Young Advocate? We're looking for outstanding advocates aged 30 or under who are raising awareness and creating lasting change for people living with a rare disease. Nominate them today! 👉 https://go.eurordis.org/BPA2027

The diagnostic odyssey doesn't only affect physical health. 📊 People living with a rare disease are 3x more likely to report feeling unhappy or depressed than the general population. Mental health must be part of rare disease care. Read more: https://go.eurordis.org/RareBarometer

🏆 The EURORDIS Policy & Leadership Award recognises the outstanding leaders driving change for our community! Someone in mind? Nominations are now open for the #EURORDISAwards2027! 👉https://go.eurordis.org/BPA2027

📢 Ready to help shape the future of rare disease research? IRDiRC is looking for experts to join its Interdisciplinary Scientific Committee. Be part of advancing global collaboration and innovation. Apply by 27 July: https://irdirc.org/call-for-new-members/

🏆 At #ESHG2026, Jessie Dubief received the 2026 GertJan Van Ommen Citation Award for EURORDIS' research on diagnostic delays. Together with discussions on genomic newborn screening, the conference reaffirmed the importance of putting patients at the heart of genetics research.

A child's chance of early diagnosis should not depend on where they are born. On #NewbornScreeningDay, we are calling for stronger European cooperation on newborn screening to ensure equity for every newborn across Europe. 🔗 https://go.eurordis.org/newborn-call

We welcome the adoption of #Sweden's first-ever National Strategy for Rare Health Conditions. National action is essential, but it must be matched by a strong #EU Action Plan on Rare Diseases. Together, we can deliver better care across #Europe. 🔗https://go.eurordis.org/NationalPolicy

How can Europe ensure that people living with a #RareDisease can access the right expertise, at the right time, wherever they live? An important discussion today at the roundtable hosted by MEP Tilly Metz on the future of cross-border healthcare. Learn more 👉 www.eurordis.org/our-prioriti...

💡Behind every winning idea is a challenge waiting to be solved. At #ECRD2026, two award-winning poster pitches showcased innovative approaches to genomic data sharing and access to ultra-rare gene therapies. 📖 Read more: https://go.eurordis.org/posterpitch

7 in 10 people living with a rare disease and their families report poor mental health. New #RareBarometer data from nearly 10,000 respondents across 45 countries shows why mental health support must be an integral part of rare disease care. 👉 https://go.eurordis.org/RareBarometer

At #ECRD2026, 14 Health Ministers and high-level representatives from across Europe came together to discuss the path towards an EU Action Plan on Rare Diseases. Ministers, policymakers, and other stakeholders share a common vision. Now the European Commission must act.

What happens when patient advocates and researchers learn side by side? The 2026 Open Academy x ERDERA Schools in Barcelona explored exactly that, helping build stronger partnerships for more inclusive and impactful rare disease research. 📖 Read more: https://go.eurordis.org/erdera

📢 How can we ensure innovation reaches those who need it most? Many people living with a rare disease still face barriers to diagnosis, treatment and care. Join this Rare Diseases International webinar on innovative financing models and solutions. 👉 https://go.eurordis.org/RDIWebinar

🧬 Multi-omics has the potential to transform the way rare diseases are understood, diagnosed and treated. But how do we ensure these advances benefit everyone who could benefit from them? 🔗 Read Claudia Fuchs' latest staff blog to find out: https://go.eurordis.org/staffblog

🌟 Nominations for the 2027 EURORDIS #BlackPearlAwards are now open! Know someone making a difference in the rare disease community? Or could that person be you? Nominate your rare disease champion today. 🔗 Submit your nomination: https://go.eurordis.org/BPA2027

The rare disease community grows stronger when knowledge and lived experience are shared. There’s still time to apply as a mentor for the Open Academy x ERDERA Mentoring Programme and help empower the next generation of patient advocates and leaders. 🔗 Apply now: https://go.eurordis.org/mentorcall

The message from #ECRD2026 is clear: the momentum is here. Now it must be turned into action. From the Blueprint to calls for an EU Action Plan, discover the key discussions and takeaways from Europe's largest rare disease conference. 📖 Read more: go.eurordis.org/ecrd2026high...

Better access. Better support. Better outcomes. Key takeaways from this morning's #ECRD2026 parallel sessions 👇

Beyond today’s #ECRD2026 sessions, both in Prague and online, the day was marked by the exchange of ideas, experiences, and expertise. Our participants came together across sectors and borders to shape a competitive future for rare disease policy in Europe. See you for Day 2!🤝

Interested in the topics discussed here? You can still register to join ECRD online and take part in the second session of these conference tracks, taking place later this afternoon. 👉 Get in on the action: go.eurordis.org/register-in

🫂Advancing Holistic Care for Rare Conditions Delivering better outcomes means looking beyond clinical care alone. Discussions focused on the value of patient-reported evidence, experience measures, registries and real-world data.