Stakeholder Forum: Patients and Citizens

The Patients and Citizens Pillar is one of three pillars of the BBMRI-ERIC Stakeholder Forum. It brings together patient organisations from across Europe to contribute the perspectives and interests of patients and citizens to the development of the research infrastructure.

The Pillar focuses on three key areas: data and digital solutions, informed consent, and patient involvement and engagement. Its members contribute to discussions and initiatives spanning biobanking, wider pan-European projects, ethics and governance.

Currently, the Pillar includes 36 patient organisations from 18 BBMRI-ERIC Member States and Observers alongside 9 EU-wide patient organisations. Having a broad membership base provides not only enriched discussions but also a good representation of patients’ diverse interests.

All BBMRI-ERIC Member States and Observers are invited to have patient organisations represented in the Stakeholder Forum. Contact our secretariat with inquiries.

FHchol Austria
Austria
RaDiOrg Rare Diseases Belgium
Belgium
Ligue Huntington Francophone Belge (Observer)
Belgium
Observer
National Patients’ Organisation
Bulgaria
Masaryk Memorial Cancer Institute
Czech Republic
The Finnish Network for Rare Diseases / Harvinaiset-verkosto
Finland
BRCA-Netzwerk
Germany
Hellenic Cancer Federation – ELLOK
Greece
EPIONI – Greek Carers Network
Greece
Hungarian Patient Forum, president of HUFERDIS
Hungary
Bridge of Health Alliance against Breast Cancer Association
Hungary
UNIAMO – Italian Federation of Rare Diseases
Italy
Italian Association of Poland Syndrome
Italy
Latvian Alliance of Rare Diseases
Latvia
Latvian Hemophilia Society
Latvia
Melanoma Patient Network of Latvia
Latvia
POLA – Lithuanian Cancer Patient Coalition
Lithuania
Malta Health Network
Malta
VSOP – Patient Alliance for Rare and Genetic Diseases
Netherlands
Post COVID Netwerk Nederland
Netherlands
Association of Families with TTR Amyloidosis
Poland
Association for the Protection of Patients’ Rights (AOPP)
Slovakia
Patient Organisations Association of Slovenia (ZOPS)
Slovenia
Platform of Patient Organisations (POP)
Spain
Rare Diseases Sweden
Sweden
Swedish Network Against Cancer
Sweden
EFA European Federation of Allergy and Airways Diseases Patients’ Associations
Europe-wide
EIWH – European Institute for Women’s Health
Europe-wide
European Brain Council (EBC)
Europe-wide
EURORDIS – Rare Diseases Europe
Europe-wide
Alzheimer Europe (Observer)
Europe-wide
Observer
Cancer Patients Europe (CPE)
Europe-wide
SATB2 Europe
Europe-wide
FH Europe Foundation
Europe-wide
Cittadinanzattiva APS & Active Citizenship Network
Europe-wide
No organisations found for this country.

The Patients and Citizens Pillar on the BBMRI-ERIC podcast

Listen to a two-part episode looking at the work of the Patients and Citizens Pillar. The episodes include interviews with members who explore why patient advocacy matters and a discussion with Jana Pavlič-Zupanc, Head of Public Affairs at BBMRI-ERIC, and Eric Vermeulen, Chair of the Stakeholder Forum. 

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Impact stories

Several organisations from the Patients and Citizens Pillar have contributed to our impact stories, sharing experiences and perspectives that deserve to be brought to life through multimedia . Have a look at the stories below to hear directly from them.

Stakeholder Forum Secretariat

The Secretariat of the Stakeholder Forum supports and coordinates the work of the Forum and connects it directly to the BBMRI-ERIC decision-making process.

A white man with short fair hair and who wears glasses, a white shirt and black jacket, is smiling at the camera

Stakeholder Forum Chair: Eric Vermeulen

✉️ e.vermeulen6@gmail.com

Jana Pavlič-Zupanc

Head of Public Affairs: Jana Pavlič-Zupanc

✉️ jana.pavlic-zupanc@bbmri-eric.eu