“Patients and their families want to be part of the process which determines the safety and efficacy of new medicines. Patient input to regulatory decisions will help to ensure the flexibility necessary to weigh risks and benefits appropriately, and secure speedy access to worthwhile interventions that will enhance the lives of those with serious and life limiting diseases.”
Alastair Kent OBE
Alastair Kent OBE is the Director of Genetic Alliance UK – the national charity of over 150 patient organisations, supporting all those affected by genetic conditions. Genetic Alliance UK’s mission is to promote the development of the scientific understanding of genetics and the part that genetic factors play in health and disease, and to see the speedy transfer of this new knowledge into improved services and support for patients.
Alastair is also the Chair of Rare Disease UK (RDUK) the national alliance for people with rare diseases and all who support them. RDUK has over 1,200 members including over 220 patient organisations, health professionals, researchers, the pharmaceutical industry and individual patients and families.
Alastair has worked in the field of genetic and rare disease healthcare for over 20 years. Alastair represents the interests of patients on numerous platforms; he is the president of the European Genetic Alliances Network (EGAN), Immediate Past Chair of the European Platform for Patient Organisations, Science and Industry (EPPOSI) and the EU Committee of Experts on Rare Diseases amongst others. He has previously been a member of the Orphan Medicinal Products Committee and Committee for Advanced Therapies at the European Medicines Agency and a member of the Human Genetics Commission.