ASUK is a patient led, resourceful and dynamic charity providing information, support and advice for children and adults with Alström Syndrome, their families and loved ones and the professionals who work with them.

We are a small and dynamic charity, hugely ambitious to make a difference to the lives of people with this ultra-rare condition. My job is to make sure we spend our money wisely, use our resources efficiently and accelerate research to make a difference to this and future generations. Individuals with Alström syndrome and their families are relentless in their pursuit to share their stories worldwide and offer true insights into the highs and lows of living with Alström. It is my role to make sure their stories are heard.

Alström Syndrome is a very rare genetic condition which can lead to progressive blindness and deafness and can also lead to heart and kidney failure, type 2 diabetes, liver dysfunction and associated problems. The symptoms arise at different stages making diagnosis difficult.

ASUK raises awareness, promotes pioneering research and encourages improved treatments through the unique AS multi-disciplinary NHS clinics.

Catherine Lewis

Kerry Leeson-Beevers