I lead our policy work and manage the policy and public affairs team, as we work to improve outcomes for everyone affected by genetic, rare and undiagnosed conditions, through evidence-based influencing and campaigning. We have long-standing focuses on access to therapies for rare conditions, genomic medicine and the continued implementation of the UK Strategy for Rare Diseases. Our approach has always been to work collaboratively and creatively with statutory organisations and policy makers, balancing ambition with pragmatism. It is important to the team that our members have a say in the policy work that we do; we work closely with our communications team to achieve this. We retain our traditional interest in sometimes controversial issues that affect our members, including animal research, research involving human embryos, reproductive choice in the context of rare conditions, preimplantation genetic diagnosis, mitochondrial replacement therapy, and gene and cell therapy.

By |April 30th, 2018|Comments Off on NICK MEADE

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