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.

Benefits 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.