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
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. Throughout the event, participants shared new insights into early diagnosis, data sharing, advanced therapies, and the everyday hurdles faced by those living with rare conditions. Organised by the BLACKSWAN Foundation, IRDiRC, and the European Rare Diseases Research Alliance (ERDERA), the conference showcased how data-driven science, targeted treatments, and inclusive policymaking can pave the way for a brighter future for patients and families 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, and stronger policies. Among the initiatives making strides in this space is ERDERA, the European Rare Disease Research Alliance. Having launched in late 2024, ERDERA took part in Rare Disease Day for the first time this year. While the event often shapes awareness efforts and READ MORE
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 consultation, open for one month, invites all interested parties to provide anonymous input on their difficulties, needs, and expectations regarding further EU actions in the field. This survey follows previous Parliament resolutions that underscored the importance READ MORE
Imagine having a disease so rare that doctors struggle to diagnose it, researchers have little data to study it, and treatments are scarce. For the 30 million people in Europe living with a rare disease, this is a daily reality. But change is happening. Over the past five years, the European Joint Programme on Rare Diseases (EJP RD) has been a game-changer, uniting 130+ institutions across 36 countries to build a research ecosystem that moves faster, collaborates better, and puts patients at the centre. Bridging the Gap: From Lab to Life Research is only as valuable as its impact on READ MORE
The landscape of clinical research and genomic data governance is evolving rapidly, with two significant developments shaping the future of global health research and regulatory frameworks: the ongoing revision of the ICH E6 (R3) Good Clinical Practice (GCP) guideline and the recent release of WHO guidance on the ethical collection, access, use, and sharing of human genome data.
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. Throughout the event, participants shared new insights into early diagnosis, data sharing, advanced therapies, and the everyday 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
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, READ MORE
Imagine having a disease so rare that doctors struggle to diagnose it, researchers have little data to study it, and treatments are scarce. For the 30 million people in Europe living with a rare disease, this is a daily reality. But change is happening. Over the past five years, the European Joint Programme on Rare READ MORE
The landscape of clinical research and genomic data governance is evolving rapidly, with two significant developments shaping the future of global health research and regulatory frameworks: the ongoing revision of the ICH E6 (R3) Good Clinical Practice (GCP) guideline and the recent release of WHO guidance on the ethical collection, access, use, and sharing of READ MORE
We are pleased to announce that the platform for submitting project applications for the Joint Transnational Call for Proposals (JTC) 2025 is now officially live. This highly anticipated call invites research teams across Europe and internationally to collaborate on cutting-edge projects aimed at “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – READ MORE
For decades, rare disease patients and their families have endured a painful “diagnostic odyssey,” bouncing between specialists and often going years without answers. Rare diseases, by definition, affect fewer than 5 in 10,000 people in the European Union, but with over 7,000 such conditions cataloged, their collective impact is profound. A staggering 70% of these READ MORE
We are delighted to announce that the Ministry of Health of the Republic of Slovenia (Ministrstvo za zdravje) has officially joined the funding organisations participating in the first Joint Transnational Call for Proposals on Rare Disease Therapies. This initiative is part of ERDERA’s ongoing commitment to advancing cutting-edge research in this critical area. READ MORE
