Alstrom syndrome support group

Provides support for those affected by Alström Syndrome, their carers and professionals working with them. This includes a forum, help with gaining access to medical assessments with doctors who have expertise in Alström Syndrome, quarterly medical screening clinics and a newsletter.

Alstrom advice

The organisation offers help and advice with educational, social and benefit problems to people affected by Alstrom syndrome.

ASUK Wellbeing Service

ASUK are piloting a new ‘Wellbeing Service’ where they will develop 1-1 and group wellbeing sessions, webinar sessions for the global community, round table discussions prior to the AS multi-disciplinary clinics and signpost to relevant local organisations for families and individuals to reach out to, as well as wellbeing resources and top tips. Melissa Crowland is the Wellbeing Coordinator.

Journey to Diagnosis Report