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
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The European Rare Disease Research Alliance (ERDERA) has launched its Networking Support Scheme (NSS), a continuously open call designed to knit together researchers, clinicians and patient advocates working on rare diseases and rare cancers. Proposals may be lodged at any time, but the first collection round will be assessed immediately after the 7 October 2025 deadline, allowing successful teams to start planning events without delay. Under the scheme, applicants can request up to €30 000 per networking event to cover meeting costs, travel costs, hybrid-meeting platforms and other essentials. Rounds will be held every six months until April 2029—or until READ MORE
ERDERA’s patient-engagement working group has opened an online survey to gauge how rare-disease patient organisations experience their role in publicly funded research, including projects financed under ERDERA’s predecessors, EJPRD and the E-Rare schemes. The questionnaire—already available here—will stay live for six to eight weeks and seeks first-hand assessments of what works, and what falls short, when patients are invited to shape studies that ultimately affect their own lives. Patients, care providers and advocates in the rare-disease field often acquire in-depth knowledge of their conditions, combining technical insight with lived experience. “Their perspectives are recognised as vital in shaping, refining, and READ MORE
On 24 May 2025, the Seventy-eighth World Health Assembly (WHA78) voted unanimously for the resolution “Rare diseases: a global health priority for equity and inclusion,” the first time the World Health Organization has formally elevated rare diseases to the top tier of its agenda. The text urges governments to integrate rare-disease policies in national health plans, expand newborn screening and timely diagnosis, and guarantee affordable access to medicines and assistive technologies under universal health coverage. It also encourages investment in digital tools, patient registries and centres of excellence, while promoting the active participation of patient organisations in policy design. Member READ MORE
My name is Sofie Skoubo, and I’m a PhD student at the Department of Public Health, Aarhus University, The Danish National Rehabilitation Center for Neuromuscular Diseases and cooperate with the Norwegian company No Isolation. Since 2020, I have worked with telepresence robots for children with cancer, neuromuscular diseases, and anxiety, and my research focuses on educational support with the help of the telepresence robot AV1 for students with neuromuscular disease. Besides that, I am a patient with neuromuscular disease and a two-time Paralympian athlete, recently taking part in the 2024 Paris Paralympic Games.
The European Rare Disease Research Alliance (ERDERA) has launched its Networking Support Scheme (NSS), a continuously open call designed to knit together researchers, clinicians and patient advocates working on rare diseases and rare cancers. Proposals may be lodged at any time, but the first collection round will be assessed immediately after the 7 October 2025 READ MORE
The EURORDIS Open Academy is set to host its 2025 Schools from 2–5 June in Barcelona, bringing together a diverse cohort of patient advocates and young researchers from across Europe. READ MORE
ERDERA’s patient-engagement working group has opened an online survey to gauge how rare-disease patient organisations experience their role in publicly funded research, including projects financed under ERDERA’s predecessors, EJPRD and the E-Rare schemes. The questionnaire—already available here—will stay live for six to eight weeks and seeks first-hand assessments of what works, and what falls short, READ MORE
On 24 May 2025, the Seventy-eighth World Health Assembly (WHA78) voted unanimously for the resolution “Rare diseases: a global health priority for equity and inclusion,” the first time the World Health Organization has formally elevated rare diseases to the top tier of its agenda. The text urges governments to integrate rare-disease policies in national health READ MORE
My name is Sofie Skoubo, and I’m a PhD student at the Department of Public Health, Aarhus University, The Danish National Rehabilitation Center for Neuromuscular Diseases and cooperate with the Norwegian company No Isolation. Since 2020, I have worked with telepresence robots for children with cancer, neuromuscular diseases, and anxiety, and my research focuses on READ MORE
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
