Alstrom Syndrome UK
Description: The Alstrom Syndrome UK provides support for those affected by Alstrom Syndrome, their carers and professionals working with them.
Weblink: http://www.alstrom.org.uk/
Tel: 07970071675
Email: catherine.lewis@alstrom.org.uk
Category: Third/voluntary Sector
Last Updated: 19th of January 2026
Services Provided
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.Events associated with this provider:
11th of July 2026
ASUK Alström Family Festival (Worcester)
The first ever Summer Festival for people affected by Alström Syndrome. There will be free activities for people of all ages, and the chance to meet with others in a relaxed and welcoming environment. For more information, click the link provided.Hosted by - Alstrom Syndrome UK