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ERDERA’s Opening Ceremony Congregates Nearly 600 Participants to Mark the Start of the New Partnership
October 28th, 2024
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.

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Rare disease experts to gather in Warsaw to shape Europe’s future strategy
March 27th, 2025
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

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ERDERA joins the 5th International Conference on Rare Diseases
March 27th, 2025
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.”

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ERDERA at the Chan Zuckerberg Initiative workshop on systematically characterising rare diseases
March 27th, 2025
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.

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Advancing rare disease diagnosis: Insights from Vicente Yepez at the RE(ACT) Congress and IRDiRC Conference 2025
March 26th, 2025
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.

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EMA warns of unregulated advanced therapies in the EU
March 21st, 2025
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 through official channels to avoid potential risks.

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Rare disease experts to gather in Warsaw to shape Europe’s future strategy

Freya2025-03-28T17:35:20+02:00March 27th, 2025|

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

ERDERA joins the 5th International Conference on Rare Diseases

Freya2025-03-27T14:39:22+02:00March 27th, 2025|

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 at the Chan Zuckerberg Initiative workshop on systematically characterising rare diseases

Freya2025-03-31T11:57:21+02:00March 27th, 2025|

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

Advancing rare disease diagnosis: Insights from Vicente Yepez at the RE(ACT) Congress and IRDiRC Conference 2025

Freya2025-03-27T12:43:31+02:00March 26th, 2025|

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

EMA warns of unregulated advanced therapies in the EU

Freya2025-03-24T11:02:06+02:00March 21st, 2025|

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

Irene Norstedt: “The EU supports collaboration because no country alone, and no stakeholder alone, has the answer for such huge unmet needs in rare disease research”

Jordi Vaque2025-03-13T17:43:54+02:00March 11th, 2025|

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

RE(ACT) Congress 2025 Concludes with Calls for Stronger Collaboration on Rare Diseases

Jordi Vaque2025-03-21T13:22:45+02:00March 7th, 2025|

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

Rare Disease Day: ERDERA Charts the Path Forward in Collaborative Research

Jordi Vaque2025-03-13T12:18:05+02:00March 3rd, 2025|

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