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Tag: Interview

Bojana Mirosavljevic

“Patients are the glue that keeps all other stakeholders together—without them, the system simply does not exist”

ERDERA interviews Bojana Mirosavljevic, scientist and founder of the Život/Life association in Serbia; and one of the country’s leading voices rare disease patient advocacy.
Radka Kaneva and Petia Stratieva, Sofia, March 2026

“National Mirror Groups are essentially a bridge — bringing European developments, standards and opportunities to clinicians and researchers.”

ERDERA interviews Prof. Radka Kaneva and Dr Petia Stratieva, two leading members of Bulgaria’s National Mirror Group (NMG), to explore how the country is working to align its rare disease ecosystem with European developments.
Emine Eylul Taksin

“By supporting more joint projects and research partnerships, Türkiye’s National Mirror Group can help ensure that the country’s scientific strengths translate into tangible benefits for patients”

ERDERA interviews Emine Eylül Taşkın, Project Manager at ERDERA and at the İzmir Biomedicine and Genome Center (IBG)
Ronald Cornet

“Data is the fuel of ERDERA’s mission to enhance our insights in rare diseases, to expedite diagnosis, and to find new treatments”

ERDERA interviews Ronald Cornet, Professor of Medical Informatics at Amsterdam UMC (University of Amsterdam), leading research on health data semantics and standards—terminology systems, information modelling, and FAIR data principles
Tomasz Grybek

“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”

Erdera interviews Tomasz Grybek, patient representative and caregiver
Magda Cheblus

“The notion that public-private collaboration is inherently problematic doesn’t align with current realities. Not only is it possible—it is necessary, beneficial, and more straightforward than many assume.”

ERDERA interviews Magda Chlebus, Executive Director Science Policy & Regulatory Affairs at EFPIA - European Federation of Pharmaceutical Industries and Associations.
“There’s a lot of value in connecting with other countries — learning what has worked, what hasn’t, and applying those lessons”

“There’s a lot of value in connecting with other countries — learning what has worked, what hasn’t, and applying those lessons”

ERDERA interviews Gavin Lawler co-ordinates the Irish National Mirror Group (NMG) on rare diseases as Programme Manager within the Health Research Board Ireland.
“The National Mirror Group was the first time patients had been treated as equal partners in this kind of forum, and it immediately changed the conversation”

“The National Mirror Group was the first time patients had been treated as equal partners in this kind of forum, and it immediately changed the conversation”

ERDERA meets Sandra Alves, a senior human-genetics researcher at the National Institute of Health Dr Ricardo Jorge (INSA), and Coordinator of the Portuguese National Mirror Group (NMG).
Sofie Skoubo

“If we can remove some of the barriers to accessing education—both visible and invisible—then we could support people with rare diseases in the right way”

ERDERA interviews Sofie Skoubo, PhD student at the Department of Public Health, Aarhus University, The Danish National Rehabilitation Center for Neuromuscular Diseases and rare disease patient.
“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone” Alexandre Mejat

“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone”

ERDERA interviews Alexandre Méjat, a person living with Bethlem myopathy, a biologist with a PhD, and AFM‑Téléthon’s representative in ERDERA.
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