The Smith-Magenis Syndrome (SMS) Foundation UK

The Smith-Magenis Syndrome (SMS) Foundation UK is a small charity that supports families affected by this genetic disorder. Registered UK Charity 1186647. Registered Scottish Charity SC050921.We connect with families through our biennial conference as well as with locally organised social events. We provide peer to peer support and social media communities.Participating in research and liaising with our international community and other rare syndrome organisations furthers our understanding of the syndrome allowing us to develop guidelines and training in conjunction with our professional advisory board. We can therefore help those with SMS to build their futures at all stages in life. We can access and provide specialist advice as required. A small grants scheme is available to improve the life experiences of the person with SMS.Through our publications, case studies, social media, fundraising and 17th November awareness day the aim to raise awareness of SMS and the existence of other rare genetic disorders.Connecting Families:• Arranging biennial conference• Facilitating regional and local social get-togethers (funding or organising)• Peer to peer support• Informal meet ups• Social media communitiesRaising Awareness:• Publications• Website and social media• 17th November awareness day campaigns• Media stories and case studies• Seminars• Fundraising• Smith-Magenis Syndrome branded merchandiseBuilding Futures:• Research funding• Training• Seminar presentations• Guidelines• Liaison and referral to professionals and clinicians• Networking with international SMS partners and rare syndrome organisations• Guidance and letters of support• Small grants provision for improving the life of the person with Smith-Magenis Syndrome