We are a small charity that supports families living with Smith-Magenis syndrome (SMS)

SMS Family Day Comes to Scotland!
Join us for a day of connection, adventure, and support.
Project Springboard
We’re pleased to share an update on our collaborative project with Cambridge University, which aims to better understand the health and well-being of people with SMS using anonymised NHS healthcare data.


EHCPs: A Guide for SMS Parents and Carers
Getting the right support for your child with Smith-Magenis syndrome can feel overwhelming — but you don’t have to face it alone. Our free downloadable guide combines legal insight, expert advice, and real-life experiences from families who’ve walked this path. Download your copy today and take the next step with confidence.

Information and Support
Our aim is to provide all caregivers and professionals with the knowledge and understanding to feel empowered and confident to support a person with SMS.
Popular Articles from our Information and Support Hub
Ways to Support Us
Meet our inspiring group of individuals with SMS achieving remarkable things!
Share your journey and connect with other SMS families
The SMS International map was created by Salli Hunt and is a list of individuals who have been diagnosed with SMS across the world. The map is not affiliated with any of the official SMS organisations and is an independent piece of work that was established to help families find others living near them. Over 950 individuals with SMS across the world are now listed, if you would like to add a person with SMS please click the button below.
Our Partners and Supporters







