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Living with rare

Living with a rare disease is often an overwhelming, life-altering experience – not just for the person affected, but also for their families, carers and support networks. With over 30 million people in Europe living with a rare condition, the collective burden is significant and still widely underestimated.

People living with rare diseases frequently face challenges such as delayed diagnoses, limited treatment options, lack of accessible information, and social isolation. These challenges can affect every aspect of life – from education and employment to emotional wellbeing and daily care. As each rare disease affects only a small number of individuals, collective advocacy and visibility are essential to driving change.

Why patient and public involvement matters

At the heart of ERDERA lies a strong commitment to meaningful Patient and Public Involvement and Engagement (PPIE). We believe that those most impacted by rare diseases must play a central role in shaping the research, data infrastructures, and policy decisions that affect them.

Patient perspectives and lived experiences inform all aspects of ERDERA – from co-designing data tools, participating in funding calls, contributing to research prioritisation, to ensuring ethical use of data. This approach is embedded across all our areas and work packages, as we work to develop a European rare disease ecosystem that is inclusive, transparent, and sustainable.

Voices that matter

This section features interviews with people living with rare diseases who have shared their personal stories, insights, and hopes for the future. Their voices are a powerful reminder of why ERDERA exists – to ensure that no one living with a rare condition is left behind.

Explore their stories and discover what “Living with Rare” truly means. 

International Patient Organisation for Primary Immunodeficiencies IPOPI

Patients as Equal Partners – ERDERA’s PPIE 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”