Nick Meade appointed as Genetic Alliance UK Chief Executive

Nick Meade has been appointed as Chief Executive of Genetic Alliance UK, taking up his role on Thursday 1 May 2025.

Elizabeth Porterfield MBE, Chair of the Board, said: ‘It gives me great pleasure to confirm Nick as our new Chief Executive. In this crucial second year of our five-year strategy, and at a time when momentum must be sustained for the future of the UK Rare Diseases Framework, Nick provides the experience, vision and continuity we need. His deep understanding of our community and proven track record of advocacy make this a welcome and timely appointment.’

Nick Meade, incoming Chief Executive, said: ‘I am proud to be taking on this role. Having spent 20 years with this amazing organisation, I’m acutely aware that I have this opportunity because of the support and collaboration of our member organisations, my colleagues and most importantly, people living with genetic, rare and undiagnosed conditions. We have achieved a lot together already, and I’m excited about what we will be able to accomplish in the years ahead. The Board and I agree that the key focus for now is on the future of the UK Rare Diseases Framework, and that the voice of our membership and our community need to be at the centre of its development. I am committed to ensuring that the voices of those living with genetic, rare and undiagnosed conditions remain at the heart of everything we do and I am grateful for the trust placed in me to do so.’

Nick has been part of Genetic Alliance UK for over 20 years and has led the policy and public affairs team and been a member of the senior management team since 2014. Throughout this time, he has worked closely with our members on a wide range of issues, from newborn screening and genome editing to data protection and access to medicines, both in the UK and across Europe. Nick has played a key role in strengthening our multi-stakeholder network and enhancing the organisation’s reputation for thoughtful engagement with complex policy challenges and impactful public affairs. This work has consistently demonstrated the value of building strong relationships with policymakers and collaborating closely with the community of people living with genetic, rare, and undiagnosed conditions.