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
Understanding the intricate biological mechanisms underlying rare diseases remains one of the greatest challenges in biomedical research. In response to this complexity, ERDERA is pleased to host the Rare Disease Maps Workshop—a two-day virtual event designed to explore how knowledge graphs and disease mapping can advance research in this field.
The two-day conference at the Medical University of Warsaw, held under the auspices of the Polish Presidency of the EU Council, concluded with a strong appeal for more integrated research, faster diagnostics, and closer cooperation between national and European policymakers.
Goverment officials, medical experts, patient organisations, and top researchers gathered today at the Medical University of Warsaw for the opening of “Towards an EU Action Plan on Rare Diseases.” Held under the auspices of the Polish Presidency of the EU Council and co-organised by the Polish Ministry of Health, the European Economic and Social Committee (EESC), and the Medical University of Warsaw, the event spotlighted the need for concrete, Europe-wide measures to help people affected by rare conditions.
My name is Dorica Dan. I’m from Romania, and I serve as the President of the Romanian Prader-Willi Association (RPWA)—my daughter has Prader-Willi Syndrome. I’m also the President of the Romanian National Alliance for Rare Diseases (RONARD) and the Romanian Rare Cancers Association. In addition, I am currently Vice-President of EURORDIS – Rare Diseases Europe. My main area of expertise is integrated care for people living with rare diseases. I believe patients need a holistic approach—encompassing medical care, social care, and special education services. I’ve been deeply involved in promoting and developing structures that provide this kind of comprehensive support.
ERDERA is excited to announce a unique two-day, in-person training event in Athens, Greece, designed for young advocates for rare diseases aged 12 to 18 years with essential knowledge and skills to actively contribute to paediatric clinical research.
On 27–28 March, ERDERA will participate in the 5th International Conference on Rare Diseases, held in Athens, Greece. ERDERA’s Scientific Coordinator, Daria Julkowska, will be among the esteemed speakers at this event, organised by Rare Diseases Greece (RDG), EURORDIS-Rare Diseases Europe, and Boussias Events, with the support of ERDERA. This conference will focus on the READ MORE
ERDERA coordination participated in the Chan Zuckerberg Initiative’s “Building a Roadmap to Systematically Characterize Rare Diseases” workshop, taking place March 24–26 at CZI Headquarters in Redwood City, California. READ MORE
The RE(ACT) Congress & IRDiRC Conference 2025, an international platform for knowledge sharing on rare and orphan diseases, has been a catalyst for scientific collaboration and advancement since its inception in 2012. READ MORE
The European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) have jointly issued a clear warning about unregulated Advanced Therapy Medicinal Products (ATMPs). While these therapies—based on genes, tissues or cells—offer genuine promise, its limited regulation procedures raise serious health and safety concerns. Authorities urge patients to confirm that any ATMP is approved READ MORE
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. READ MORE
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 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. READ MORE
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, READ MORE
