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BBMRI-ERIC & Patient Organisations Join for Engagement Process

Brussels, 21 April 2016 – Patient advocacy group representatives and the Biobanking and BioMolecular resources Research Infrastructures – European Research Infrastructure Consortium (BBMRI-ERIC) met on 19 April to address key issues for a future constructive dialogue to ensure patients’ needs are well represented in the activities of BBMRI-ERIC.

In its mission to facilitate the access to resources and support high quality biomolecular and medical research BBMRI-ERIC aims to involve key stakeholders in its work to ensure their voice is heard and represented in European biomolecular and health research. As donations of valuable human biological samples and the corresponding data, stored by the biobanks, are essential for understanding human diseases and corresponding prevention programmes, BBMRI-ERIC is dedicated to consulting the patients’ community in this process. Thus, BBMRI-ERIC firstly met with the patients’ groups representing areas of expertise on genetics, rare diseases, chronic diseases, healthy ageing/prevention, degenerative diseases, cancer, obesity, and infectious diseases to inform them of BBMRI-ERIC’s activities and to jointly address issues and concerns of the patient community. The stakeholders included BBMRI-ERIC, the European Institute of Women’s Health, European Cancer Patient Coalition, EURORDIS - Rare Diseases Europe, Genetic Alliance UK, Alzheimer Europe, and VSOP. Among the most pressing challenges identified were data (over)protection and the issue of consent, reciprocity and re-contacting the patients, and personalized medicine. “The launch of a stakeholder engagement with patient advocacy representatives is a very exciting initiative for BBMRI-ERIC, because it will provide input directly from the patient community, which will facilitate our focus on supporting the biological research capacity in Europe, intended to support the development of therapies for patients,” said Jan-Eric Litton, Director-General of BBMRI-ERIC. The meeting, chaired by Alastair Kent of Genetic Alliance UK, marked the beginning of a transparent consultation and participatory engagement process that is to continue on 31 May 2016 at a side event to the Personalized Medicine Conference 2016 with the presentation of a consolidated input to the BBMRI-ERIC working group drawing up the code of conduct, intended to contribute to the proper application of the General Data Protection Regulation. For BBMRI-ERIC, please contact: Michaela Th. Mayrhofer PhD, Senior Project Manager/Chief Policy Officer of the Common Service of Ethical, Legal and Societal Issues, BBMRI-ERIC Email: michaela.th.mayrhofer@bbmri-eric.eu tel: + 43 316 34 99 17-13 For Media, please contact: Luc Deltombe, Communication/Finance Assistant, BBMRI-ERIC Email: luc.deltombe@bbmri-eric.eu tel: + 43 316 34 99 17-21 or Declan Kirrane, Managing Director, ISC Email: declan.kirrane@iscintelligence.com tel: +32 494 346040 Editor’s note BBMRI-ERIC (http://bbmri-eric.eu/) is a pan-European research infrastructure which provides access to quality controlled human biological samples, such as blood, tissues, cells or DNA, and associated clinical and research data. It aims to establish, operate and develop a pan-European distributed research infrastructure of biobanks and biomolecular resources in order to facilitate the access to resources as well as facilities and to support high quality biomolecular and medical research. BBMRI-ERIC operates on a non-economic basis. BBMRI-ERIC is set up as a distributed research infrastructure in most, if not all European member states. Including the United Kingdom as its latest member, BBMRI-ERIC consists as of today of 17 member states and one international organisation, making it one of the largest research infrastructures for health research in Europe.

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