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
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.
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 Warsaw, the event will mark an important step in shaping future European policy on rare diseases. This high-level meeting will bring together policymakers, researchers, clinicians, and patient representatives to discuss key priorities for a European action plan. With national strategies evolving, the focus now shifts READ MORE
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 theme: “Sustainability in Action: Rethinking the Rare Disease Paradigm from Prevention to HTA and Access.”
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.
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
