Company Profile

Alstrom Syndrome UK is a charitable company. We support people affected by Alström Syndrome – a very rare life threatening disease causing childhood blindness, hearing loss, heart and kidney failure, diabetes and many associated disorders. We also support their families, carers and professionals who work with them. We are supported by an NHS, National Specialised Commissioning Service grant for our role in organising and providing support to families to attend multi-disciplinary clinics at Birmingham for children and Torbay hospital for adults. We are also due to receive an EU grant in January. We work closely with doctors from Torbay and Birmingham hospitals as well as researchers.