The Rare Disease Patient and Ethics Council (RD-PEC)

The Rare Disease Patient and Ethics Council (RD-PEC) examines ethical, social and participatory questions linked to research in the context of RD-Connect, and its partner projects NeurOmics and EURenOmics.

How it works

The RD-PEC responds to any question about ethics, social issues and patient participation related to the work of RD-Connect, NeurOmics and EURenOmics. Anyone with an interest in the work can pose a question to the RD-PEC. The question and our answer will be made publicly available. Your identity and personal details will remain confidential.

Mission statement

RD-PEC is a voluntary, multidisciplinary group comprised of patients, parents, representatives of patients’ organisations, clinicians, legal academics, sociologists, scientists and ethicists. Their work has a collegiate, collaborative and inclusive character. The group provides balanced opinion as well as ethical, social and participatory guidance to enhance the excellence that RD-Connect, NeurOmics and EURenOmics aspire to.

Membership

Membership of the RD-PEC is voluntary and includes members of the Ethics Boards and Patient Councils of RD-Connect, NeurOmics and EURenOmics, as well as some co-opted members.

Chair & Contact

Position: Senior Lecturer
Organisation: Newcastle University
Area of work: Ethical Legal Social Issues

Members

Position: Member of SMA Support UK
Organisation: Lakeside Regulatory Consulting Services Ltd.
Area of work: Ethical Legal Social Issues

Position: Professor
Organisation: Hôpital Robert Debré
Area of work: Ethical Legal Social Issues

Position: Head of Department of Biology and Medical Genetics
Organisation: Charles University
Area of work: Impact, Registries

Position: Researcher
Organisation: Uppsala University
Area of work: Ethical Legal Social Issues

Organisation: Office of Population Health Genomics (OPHG)
Area of work: Bioinformatics, Ethical Legal Social Issues, Registries

Position: Coordinator
Organisation: FEDERG Initiative
Area of work: Ethical Legal Social Issues

Organisation: Deutsche Gesellschaft fuer Muskelkranke (DGM), Initiative SMA
Area of work: Ethical Legal Social Issues

Position: Trustee Advisor
Organisation: UK Thalassaemia Society
Area of work: Ethical Legal Social Issues

Position: Harold Macmillan Professor of Medicine
Organisation: Newcastle University
Area of work: Management

Position: DMD Programme Coordinator
Organisation: Newcastle University
Area of work: Ethical Legal Social Issues

Organisation: NephcEurope Foundation
Area of work: Biobanks, Ethical Legal Social Issues

Position: Senior Lecturer and Co-Director PEALS
Organisation: Newcastle University
Area of work: Ethical Legal Social Issues

RD-Connect structure:

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