I joined Alström Syndrome UK (ASUK) in 2003 when it was first suggested that my son may have the condition. His diagnosis was later confirmed following genetic testing. I have had various roles during my time at ASUK and was thrilled when I was appointed as the Chief Executive in November 2021. ASUK works in partnership with healthcare professionals in Birmingham to deliver a highly specialised service for people diagnosed with Alström Syndrome. We offer individualised support through our family support service, and we strive to ensure that everyone has equitable access to healthcare, services and support. We raise awareness of this ultra-rare genetic condition, provide accessible information and promote research. Through the Breaking Down Barriers project, we facilitate a network of organisations working together to develop supportive and inclusive services for people from diverse and marginalised communities who are also affected by rare/genetic conditions. We value collaboration at ASUK and understand the importance of working with others within the rare and genetic community. I am experienced in patient and public involvement and have been involved in various UK, EU and global projects focussing on patient involvement in clinical trial designs and drug development. I am a patient representative on the England Rare Diseases Framework Delivery Group and a co-applicant on various NIHR funded research studies. I thoroughly enjoy my role at ASUK, especially the direct contact I have with children, young people, adults, families and carers who are affected by Alström Syndrome and other rare/genetic conditions. I work alongside a fantastic team at ASUK and we are all very passionate about ensuring our work remains led by people with lived experience.

Ann Chivers

Dr Tim Barrett