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
We met Irene Norstedt, Director for the People Directorate at DG Research and Innovation in the European Commission, at the RE(ACT) Congress in Brussels, where she delivered a compelling presentation on diverse funding models targeting different research needs.
The European Medicines Agency (EMA), together with the European Medicines Regulatory Network, has issued a renewed call for registrations in their Real-World Data (RWD) Catalogues, marking one year since the initiative’s launch. This publicly accessible online resource replaced the previous ENCePP Resources Database and the EU PAS Register, consolidating metadata on RWD sources and studies to aid regulators, researchers, and pharmaceutical companies in assessing the real-world use, safety, and effectiveness of medicines. EMA aims to build a comprehensive resource by encouraging stakeholders who manage data sources or who have conducted RWD studies to register their metadata. Participation not only increases READ MORE
The 8th RE(ACT) Congress and the 6th IRDiRC (International Rare Diseases Research Consortium) Conference concluded today, marking the end of a three-day summit where scientists, patient advocates, funders, and policymakers tackled the rare disease field’s most pressing challenges.
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.
The European Rare Diseases Research Alliance (ERDERA) is delighted to invite researchers, patient advocates, and early career professionals to a key webinar on 17 December 2024, following the official launch of the 2025 Joint Transnational Call for Proposals for “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation” on READ MORE
From 5–7 March 2025, the global rare disease community will convene for a landmark event: the 8th RE(ACT) Congress & IRDiRC Conference. Taking place in Brussels, this gathering is jointly organised by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC). READ MORE
The Innovating for Impact: Shaping the Future of Rare Disease Treatment event, hosted by Euronews and organised by Rare Disease Moonshot, brought together key figures in rare disease advocacy to discuss the future of treatment in Europe. READ MORE
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
