An alliance of non-profit organisations working across borders and diseases to improve the lives of all people living with rare diseases.
EURORDIS-Rare Diseases Europe
Loading...
🧬 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
🏥 Access to Specialised Healthcare
Participants highlighted the need for stronger coordination between local, national and European systems, clearer care pathways, better use of data, and closer links between national and European networks to reduce fragmentation and improve access to expertise.
💊 Access to Innovation
As Europe prepares for orphan medicines to enter the scope of the HTA Regulation, discussions focused on meaningful patient involvement, recognising lived experience alongside clinical evidence, and ensuring innovation is not overlooked when data are limited.
💚 Mental Health and Wellbeing
Mental health must be recognised as a core component of rare disease care. Discussions highlighted persistent gaps in support and the need for integrated, lifelong approaches that prioritise prevention, resilience and quality of life.
Better access. Better support. Better outcomes.
Key takeaways from this morning's #ECRD2026 parallel sessions 👇
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...
🌟 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
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!🤝
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
👉 Want to be part of the discussion? The conference isn't over yet. Join us online and follow the remaining sessions as the rare disease community continues to shape the future of policy, care and innovation in Europe: go.eurordis.org/register-in
