I joined Alström Syndrome UK in 2004 when my son was diagnosed with the condition. I am the National Development Manager, responsible for overseeing the Family Support Service and I work closely with our medical teams in Birmingham as we work in partnership to deliver NHS highly specialised multi-disciplinary clinics.
I am Project Lead for Breaking Down Barriers, a network of organisations, working together to develop supportive and inclusive services for people from diverse and marginalised communities.
I have been involved in various UK, EU and global projects focussing on patient engagement in clinical trial designs and drug development including:
- CIOMS XI working group developing guidelines on patient involvement in the development and safe use of medicines.
- A member of the Patient Safety Communication Advisory Panel at Bayer
I am a patient representative on the England Rare Diseases Framework Delivery Group and co-applicant on NIHR funded research studies, experienced in patient and public involvement.