Our Vision

A world where people living with Alström Syndrome receive a timely diagnosis, access to specialist care, treatment and support and feel empowered to live the life they choose.

Our Mission

• To provide information and person-centred support for people living with Alström Syndrome, their families, carers and the service providers involved in their care.
• To raise awareness, facilitate research and advocate for specialist services and support.
• To create opportunities for peer-to-peer support and provide fun and engaging activities.

What we aim to do

• To promote the health and wellbeing of people with Alström Syndrome – particularly (but not exclusively) through the provision of awareness raising, support, advice and information for people living with Alström Syndrome, their families, carers and those working with them.
• To promote research into Alström Syndrome and related conditions in the UK and abroad and disseminate the results to the public.

How We’re Here for You

We offer a range of support, resources, and opportunities for individuals and families living with Alström Syndrome:

• Person-centred support for individuals and their families – tailored to your needs, every step of the way.
• A caring, inclusive community where you can feel supported, involved and your voice matters.
• Promotion of innovative research into Alström Syndrome and related conditions.
• Specialist medical screening clinics, providing the latest information to help manage the condition effectively.
• The Alström Syndrome Medical Handbook – your go-to guide for trusted, up-to-date information.
• European Clinical Guidelines to support best practice in care and treatment.
• Family and Professional Conferences that brings people together to learn, share, and connect.
• Fun activities and exciting projects for all ages