ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595.
Views and opinions expressed are those of the author(s) only and do not necessarily reflect those of the European Union or any other granting authority, who cannot be held responsible for them.
© 2025 | ERDERA — European Rare Diseases Research Alliance
ERDERA is coordinated by Insem
As Rare Disease Day 2025 comes to a close, its impact continues to resonate across Europe and beyond. Held annually on the last day of February, this year’s event drew critical attention to the 30 million people in Europe living with a rare disease, underscoring the urgent need for faster diagnoses, increased research, improved treatments, and stronger policies.
On 28 February, coinciding with the 2025 Rare Disease Day, Parliament’s public health committee, SANT, launched an online survey to gather insights on rare diseases. The initiative aims to build a detailed understanding of the challenges faced by individuals affected by rare diseases, as well as to collect views from stakeholders—including patients, caregivers, industry representatives, and NGOs—to inform future policy and legislative reforms.
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.”
The European Rare Diseases Research Alliance (ERDERA) has been prominently featured in the recent edition of Échos de l’Europe. This publication explores ERDERA’s, inception, its pillars and roadmap, highlighting collaborative efforts aimed at improving the lives of rare disease patients across Europe. READ MORE
Nearly 600 people followed ERDERA opening ceremony either online or in person in central Paris on 28 October. We summarise next some highlights from the speakers who took the floor during the event that marked the start of a new era in rare disease research. READ MORE
The European Rare Diseases Research Alliance (ERDERA) is excited to announce the upcoming launch of its Joint Transnational Call (JTC) for Proposals 2025. Set to officially open on December 10, 2024, this call will invite research teams from across Europe and beyond to submit collaborative projects focused on “Pre-clinical therapy studies for rare diseases using READ MORE
ERDERA was launched in September 2024 with a remarkable budget of 380 million euros, marking a significant commitment from the European Union, Horizon Europe, and member states. Coordinated by the National Institute of Health and Medical Research (INSERM) in France, this ambitious partnership unites over 170 organizations from the public and private sectors to advance READ MORE
In a recent interview with Science Business, ERDERA Scientific Coordinator Daria Julkowska discussed the upcoming launch of the European Rare Diseases Research Alliance (ERDERA), its mission, and its critical role in advancing rare disease research across Europe. READ MORE
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
