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Tag: Living with Rare

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.
Rare Disease Day 2026 visual representation

One year of ERDERA: the European alliance built to accelerate rare disease research reports first results

28 February, across Europe and beyond: one year into delivery, ERDERA is advancing towards shorten diagnostic journeys and improved therapies for people living with a rare disease.
International Patient Organisation for Primary Immunodeficiencies IPOPI

Patients as equal partners – ERDERA’s vision echoes in Brussels

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
ERDERA launches survey to put rare-disease patients at the heart of research

ERDERA launches survey to put rare-disease patients at the heart of research

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.
“Knowing there’s a place where someone will listen, understand, and guide you towards what’s best for your child is invaluable

“Knowing there’s a place where someone will listen, understand, and guide you towards what’s best for your child is invaluable.”

ERDERA interviews Dorica Dan, President of the Romanian Prader-Willi Association (RPWA), the Romanian National Alliance for Rare Diseases (RONARD) and the Romanian Rare Cancers Association, and Vice-President of EURORDIS–Rare Diseases Europe.

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