Rare diseases: then, now and in future – Alastair Kent

Speaker biography Alastair was the executive director of Genetic Alliance UK (London, UK) for approximately 25 years. He actively engaged in developing policy and practice in biomedical research and service development that would reflect and respect the needs and expectations of patients and families affected by serious, chronic and life limiting diseases that are rare, genetic or both. Alastair worked at a global level to ensure that patients and families were heard and involved in decision-making. He has lectured and published on a wide range of issues relevant to patient and family needs and expectations. Alastair was awarded an OBE for services...