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Alastair Kent OBE was the Director of Genetic Alliance UK (the UK alliance of 200 patient groups, supporting all those affected by genetic conditions) for almost 25 years. He has been a member of many committees and working groups and has lectured and published on a wide range of issues relevant to patient and family needs and expectations. Alastair was made OBE for services to health care in 2011, and elected a Fellow of the Royal Society of Arts in 2017. Since retiring, Alastair has continued to work on behalf of patients and families affected by rare and genetic diseases. He is currently co-chair of the UK Rare Disease Policy Board at the Department of Health and Social Care and Chair of the Rare Diseases Advisory Group for NHS England.

Bruno Sepodes is a Professor of Pharmacology and Pharmacotherapy at the Faculty of Pharmacy of the University of Lisbon (Portugal). Besides being Senior non-clinical expert for INFARMED (Portuguese National Authority for Medicines and Health Products), he became a member of the European Medicines Agency’s Committee for Orphan Medicinal Products (COMP) in 2008, and served for two mandates as Chairperson of this Committee (2012-2018). Additionally, Bruno is also member of the European Medicines Agency’s Committee for Human Medicinal Products (CHMP) and of the Committee of Advanced Therapies (CAT). In November 2018, Bruno was elected Vice-Chair of the Committee of Human Medicinal Products (CHMP).

Adam has worked for Pfizer for over 10 years. His current role is Senior Director in Pfizer’s Patient and Health Impact division. Previously, Adam has worked in Pfizer’s international policy division and led Pfizer’s work on science policy in Europe for several years. Adam initially joined Pfizer as part of the government affairs team in the UK, working on healthcare reform and health economics. Before joining Pfizer, Adam worked for a variety of government and public sector organisations, including the Prime Minister’s Strategy Unit, the House of Lords Science and Technology Committee, and the Commission for Patient and Public Involvement in Health.

Edmund Jessop has been practising public health for the NHS in England for 30 years. From 2002, he has been medical adviser to the team which plans, funds and monitors services for patients with very rare disease. Edmund has acted as UK representative to the various EU Expert Groups on Rare Disease.

Kristina Larsson joined the orphan team of the EMA as the Head of Office in July 2014. Before that she spent 8 years as a scientific officer in the scientific advice team of the EMA in charge of the Scientific Advice Working Party secretariat. Before joining the agency she worked three years in clinical research for AstraZeneca in Mölndal, Sweden. Kristina has a master of Medicine in Pharmaceutical Bioscience from the University of Gothenburg.

Yann Le Cam was one of the founders of EURORDIS-Rare Diseases Europe in 1997. He is the organisation’s Chief Executive Officer since 2000. Yann initiated Rare Diseases International (RDI) in 2009. He is an elected member of the RDI Council and Chair of the RDI Advocacy Committee. He is a founding member of the NGO Committee for Rare Diseases (United Nations, New York) in 2014 and its Vice-Chair. Yann is a Co-Chair of the Global Commission to End the Diagnostic Odyssey of Children with Rare Diseases since its launch in 2018. Yann is a member of the World Economic Forum’s Health Stewards Board from 2020 and of its Global Precision Medicine Council since 2019. More on recent past positions https://www.eurordis.org/staff

Dr Jordi Llinares is currently the Head of Research and Innovation at the European Medicines Agency (EMA). At the Agency he has had different posiitons including Head of Orphan Medicines, Scientific Support Development and, and Scientific and regualtory management between 2009 and 2020. Dr Llinares graduated as a Medical Doctor from the University of Barcelona and specialised (MIR) as clinical pharmacologist at Hospital Vall d’Hebron. He has a Masters in Science in Epidemiology from the London School of Hygiene and Tropical Medicine (London). Before joining the Agency he worked as clinical pharmacologist at Hospital de Sant Pau (Barcelona) and was member of the Ethics Committee of the IAS (Institut d’Assistencia Sanitaria).

Kay Parkinson was the mother of two children who were diagnosed with Alström Syndrome when they were aged 18 & 15 In 1998 she founded the charity Alström Syndrome UK (ASUK). In 2007, ASUK was made an equal partner in the patient-led Alström Syndrome multi-disciplinary clinics . In 2012 she founded Alström Syndrome Europe (ASEU). In 2013 Alström Syndrome UK was awarded EURORDIS Patient Organisation of the Year for outstanding services to Alström patients.

Dr Pirard is involved for more than 15 years in the field of rare genetic diseases and orphan medicinal product development. She works as public affairs director at Sanofi-Genzyme and is the co-chair of the industry EFPIA-Europabio joint task force on rare diseases and orphan medicinal products which brings together companies with an interest in developing treatments for rare disorders.

Gayatri R. Rao is the Director for the Office of Orphan Products Development (OOPD) at FDA. The Office’s mission is to advance the development of promising drugs, biologics, devices, and medical foods for rare diseases. Dr. Rao oversees several programs that promote product development for rare diseases. She is FDA’s lead for coordinating cross-Agency efforts on rare disease issues and engages in numerous collaborations and outreach efforts to patients, sponsors, and other stakeholders.