ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595.
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© 2025 | ERDERA — European Rare Diseases Research Alliance
ERDERA is coordinated by Insem
Imagine having a disease so rare that doctors struggle to diagnose it, researchers have little data to study it, and treatments are scarce. For the 30 million people in Europe living with a rare disease, this is a daily reality. But change is happening.
The landscape of clinical research and genomic data governance is evolving rapidly, with two significant developments shaping the future of global health research and regulatory frameworks: the ongoing revision of the ICH E6 (R3) Good Clinical Practice (GCP) guideline and the recent release of WHO guidance on the ethical collection, access, use, and sharing of human genome data.
We are pleased to announce that the platform for submitting project applications for the Joint Transnational Call for Proposals (JTC) 2025 is now officially live. This highly anticipated call invites research teams across Europe and internationally to collaborate on cutting-edge projects aimed at “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation.”
For decades, rare disease patients and their families have endured a painful “diagnostic odyssey,” bouncing between specialists and often going years without answers. Rare diseases, by definition, affect fewer than 5 in 10,000 people in the European Union, but with over 7,000 such conditions cataloged, their collective impact is profound. A staggering 70% of these diseases are genetic, yet pinpointing the precise DNA mutation responsible has often been a Herculean task. Now, thanks to an unprecedented pan-European collaboration and advances in big data analysis, hope is on the horizon for those with previously unsolved rare diseases.
We are delighted to announce that the Ministry of Health of the Republic of Slovenia (Ministrstvo za zdravje) has officially joined the funding organisations participating in the first Joint Transnational Call for Proposals on Rare Disease Therapies. This initiative is part of ERDERA’s ongoing commitment to advancing cutting-edge research in this critical area.
The European Rare Diseases Research Alliance (ERDERA) is excited to announce the call for nominations for its Multistakeholder Advisory Board (MAB). Our mission is to transform the landscape of rare disease research in Europe and improve the lives of over 30 million people living with rare diseases. READ MORE READ MORE
The ERICA ERN Research Conference will take place from December 11th to December 13th, 2024 in Udine, Italy and will be hosted by MetabERN. READ MORE
The EURORDIS Open Academy accompanies patient advocates and researchers by offering rare disease-specific comprehensive training programmes that empower them with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners. READ MORE
The European Rare Diseases Research Alliance (ERDERA) kicks off this September, with an estimated budget of 380 million euros and the aim of improving the lives of 30 million rare disease patients in Europe and beyond. READ MORE
