Speakers

Alström Syndrome UK (ASUK) was established in 1998 and is a registered charity providing information and support to individuals and families living with Alström Syndrome (AS) and to the service providers working with them. ASUK works in partnership with Birmingham Women’s and Children’s Hospital and the Queen Elizabeth Hospital, Birmingham to deliver a highly specialised service, funded by NHS England. As a patient led organisation, the needs and wishes of people affected by AS remain at the heart of everything we do. We aim to; provide personalised support, raise awareness, conduct pioneering research, and enable better treatments and monitoring through the AS multi-disciplinary clinics.

ASUK co-founded Breaking Down Barriers in partnership with The Sylvia Adams Charitable Trust.

Breaking Down Barriers is a network of over 70 organisations providing support to people living with rare and genetic conditions. We work together to learn, develop, and share good practice. Promoting equity, diversity and inclusion is at the centre of what we do. Our Experts by Experience Advisory Group help us to understand the lived experiences of people from diverse, marginalised and under-served communities who are affected by rare and genetic conditions. We create safe spaces for learning and collaboration, deliver training, contribute to research and run a community outreach project. We unite and strive for equitable access to services and support for all.

Kerry has lived experience as her son is diagnosed with AS which is an ultra-rare and complex condition. She is a patient representative on the England Rare Diseases Framework Delivery Group and is co-applicant on various NIHR funded research studies. Kerry has been involved in various UK, EU and global projects focussing on rare diseases, genomics and drug development and is experienced in patient and public involvement and engagement.