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Stakeholder Forum
What is the BBMRI-ERIC Stakeholder Forum?
The BBMRI-ERIC Stakeholder Forum is the main interface for European patients’ organisations, civil society, industry and academia to interact with the biobanking universe. It is an integral part of BBMRI- ERIC’s governance and culture.
Through the Stakeholder Forum, we are building a sustainable, egalitarian relationship between the biobank community and its stakeholders. The objective is to increase each other’s awareness of needs and expectations on key issues related to biobanking, such as data protection, informed consent in health research, health research priorities, and other ethical, legal and societal issues.
Stakeholder Forum is enshrined already in the BBMRI-ERIC Statutes and has been put in place at the very inception of the BBMRI-ERIC in 2009 (read the report: https://www.bbmri-eric.eu/wp-content/uploads/stakeholders-forum-report-1.pdf
Stakeholder Forum Patient Pillar
Patients’ organisations already working on biobanking issues have shown a long-standing interest in BBMRI-ERIC and have contributed to the development of the research infrastructure. For 2022 the strategic aims of the Patient Pillar have three themes: pediatric biobanking, cancer research, and Trusted Research Environments for sharing patient/donor-related data. All three themes support wider pan-European projects and initiatives, and all three reflect interests and concerns of patients and patient organisations. In addition, patient organizations and citizens pillar will have an active role in co-designing the Europe Biobank Week and organizing the sessions diving into the topics that lie at heart of patients and patient organizations.
Stakeholder Forum Patient Pillar Members
The secretariat of the Forum has recently been renewed. In addition, BBMRI-ERIC has taken steps towards enlarging the membership of the Patient and Citizens Pillar in order to better reflect the diversity of membership across its Member States.
In April 2022, 12 organisations from 7 BBMRI-ERIC Member States joined the existing 11 members and 1 observer. Having a broader membership base will provide not only enriched discussions, but also a good representation of patients’ interests from BBMRI-ERIC Member States and Observers. All BBMRI-ERIC Member States and Observers are invited to have patient organisations represented in the Stakeholder Forum.
- Austria:
- Belgium:
- Czechia:
- Finland
- Germany:
- Greece:
- Hellenic Cancer Organisation
- EPIONI – Greek Carers Network (EL)
- Hungary:
- Italy
- Latvia:
- Latvian Alliance of Rare Diseases
- Latvian Hemophilia Society
- Melanoma Patient Network of Latvia
- Lithuania
- Netherlands:
- Poland
- Sweden:
- Biobank Sweden’s patient representative
- Rare Diseases Sweden (observer)
- Swedish Network Against Cancer (observer)
- Europe:
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.
