Kerry Leeson-Beevers

Alström Syndrome UK
National Development Manager
I joined Alström Syndrome UK (ASUK) in 2003 when my son was diagnosed with the condition. I am now the National Development Manager responsible for overseeing the Family Support Service and I work closely with our medical teams in Birmingham, UK to support the highly specialised multi-disciplinary clinics. I also manage contracts with pharmaceutical companies to support clinical trials. I have been involved in various UK and EU projects focussing on patient engagement in clinical trial designs and drug development and I am a patient representative on the CIOMS XI working group: Patient Involvement in Development and Safe Use of Medicines. I am a patient representative on the UK Rare Disease Policy Board.