ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595.
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My name is Alexandre Méjat. I’m a patient by birth; I’m affected by a rare disease called Bethlem myopathy. I’m also a scientist by training: I have a PhD in biology, and I represent AFM-Téléthon in ERDERA, which is a patient organisation from France dedicated to neuromuscular diseases—but more broadly to all rare diseases.
A new questionnaire, “Promoting capacity-development actions” – has been released under one of the teams developing the European Rare Diseases Research Alliance (ERDERA) team that focuses on harmonization of the different national capacities. The goal is simple but urgent: to capture first-hand evidence of the funding gaps, technical hurdles and policy barriers that still keep many low- and middle-income or smaller European nations on the sidelines of global rare-disease science.
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 Alexandre Méjat. I’m a patient by birth; I’m affected by a rare disease called Bethlem myopathy. I’m also a scientist by training: I have a PhD in biology, and I represent AFM-Téléthon in ERDERA, which is a patient organisation from France dedicated to neuromuscular diseases—but more broadly to all rare diseases. READ MORE
A new questionnaire, “Promoting capacity-development actions” – has been released under one of the teams developing the European Rare Diseases Research Alliance (ERDERA) team that focuses on harmonization of the different national capacities. The goal is simple but urgent: to capture first-hand evidence of the funding gaps, technical hurdles and policy barriers that still keep READ MORE
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. READ MORE
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. READ MORE
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 READ MORE
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. READ MORE
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. READ MORE
A conference entitled “Towards an EU Action Plan on Rare Diseases” will be held on 10 April 2025 at the Medical University of Warsaw, Poland, under the auspices of the Polish Presidency of the EU Council. Organised by the Polish Ministry of Health, the European Economic and Social Committee (EESC), and the Medical University of READ MORE
