Smith-Magenis Syndrome Foundation UK
Connecting Families, Raising Awareness, Building Futures
Latest information on SMS, and related research.
The SMS Foundation is trying to build an accurate picture of education provision across the UK. We need this information to help us understand some of the issues that families face. This will help us identify what the problems are, and how we can work towards successful outcomes for young people with SMS. The survey …
We are delighted to announce that the first of two research articles for the Safe Sleeping project, commissioned by the SMS Foundation, has been published by the Orphanet Journal of Rare Diseases. The project aims to gain a better understanding of the predicaments faced by families and professionals around sleep in SMS. The outcome expected …
This survey is being conducted by the Smith-Magenis Syndrome (SMS) Foundation UK with the purpose of improving our understanding of COVID-19 in people with Smith-Magenis Syndrome across the world. After collating the results and appropriate consultation with our scientific and clinical advisers, we intend to publish a summary of our findings. This is a piece …
The aim of this study is to provide a definitive demographic profile of syndrome diagnosis across the UK. This is to assist the charity in: Establishing the actual diagnosed population with Smith-Magenis syndrome. Incident rate is estimated at 1 in 15-25,000, which would suggest up to 4,500 people in the UK have SMS. Our membership database has identified …
The Scottish Medicines Consortium (SMC) has rejected the application to recommend prolonged-release melatonin (Slenyto®) as a treatment for insomnia in children with autism spectrum disorder and/or Smith-Magenis syndrome (SMS). The decision was based on uncertainty that this medicine would offer value for money to NHS Scotland. The wider implication is that the SMC are saying …
The SMS UK Foundation has commissioned a project to understand the requirements for sleeping safely and the potential solutions for this to happen. We need the help of our global SMS families. If we could capture the sleep experiences of every SMS family, or as many as possible, then we would have a significant body …
