Table 1 List of delegates (in alphabetical order)

Campbell, Jean

Founding member of Professional Patient Advocates in Life Sciences, a non-profit organization in the United States to support patient-advocacy professionals in pharmaceutical and biotechnology companies.

Greene, Lesley

Founder of Children Living with Inherited Metabolic Diseases (CLIMB), founding member of EURORDIS, and currently a patient-representative member (2009-) and vice chair of COMP (2012-).

Hayden, Cori

Professor of Anthropology at the University of California Berkeley, with research interest in benefit-sharing arrangements in biosciences.

Kent, Alastair

Director of Genetic Alliance UK and chair of Rare Diseases UK, which is a multi-stakeholder campaign in the United Kingdom for patients with rare diseases and all who support them.

Livingston, Heidi

Public Involvement Advisor at the National Institute for Health and Clinical Excellence (NICE) (participated in a personal capacity as an expert in patient involvement in technology appraisal processes).

Meadowcroft, Robert

Chief executive of Muscular Dystrophy UK, a charity organization supporting individuals affected by muscle-waisting conditions in the United Kingdom.

Mikami, Koichi

Research fellow in Making Genomic Medicine at the University of Edinburgh and co-organizer of the workshop.

Moreira, Tiago

Reader at Durham University with research interest in the roles of patient organizations in the organization of health care and governance of biomedicine.

Parker, Samantha

Head of Patient and Policy Affairs at biotechnology company Lysogene in France.

Pavelin, Colin

Head of Regenerative Medicine and Rare Disease Policy at the UK Department of Health (participating in a personal capacity as an expert in national policies on rare diseases in the UK).

Purves, John

Former head of the Quality of Medicines sector at the European Medicines Agency, and an honorary fellow of the Innogen Centre at the University of Edinburgh.

Roberts, Charlotte

Communications Officer of the MPS Society, a charitable organization supporting individuals, families and professionals affected by mucopolysaccharide and related diseases throughout the United Kingdom.

Schoneveld van der Linde, Maryze

Former board member of the International Pompe Association, and a founder of consultant company Patient Centered Solutions in the Netherlands.

Spink, Jayne

Chief Executive Officer of the Tuberous Sclerosis Association, a charity supporting individuals affected by tuberous sclerosis complex and their families and carers in the United Kingdom and funding research.

Spring, Rachel

Theme Coordinator at the National Institute for Health Research’s Rare Diseases Translational Research Collaboration

Sturdy, Steve

Professor of the Sociology of Medical Knowledge at the University of Edinburgh, principal investigator of the Making Genomic Medicine project, and co-organizer of the workshop.

Timmis, Oliver

Chief Executive Officer of the AKU Society, a charity organization supporting individuals affected by alkaptonuria in the United Kingdom that initiated a EU-funded consortium called DevelopAKUre program.

Upadhyaya, Sheela

Associate Director of Highly Specialised Technology program at the National Institute for Health and Clinical Excellence (participated in personal capacity as an expert in evaluation of medicines for rare diseases).