The Smith-Magenis Syndrome (SMS) Foundation UK

Support families and professionals who care for, or support individuals with Smith-Magenis Syndrome

Our Vision:

Every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community.

Our Mission:

The Smith-Magenis Syndrome (SMS) Foundation UK shall be at the heart of our community of individuals, families, carers and professionals living and working with Smith-Magenis Syndrome and we will be the first point of contact for those seeking information and support.

Our Strategic aims:

Connecting families:

•           Bringing the Smith-Magenis Syndrome community together.

Supporting those who have or are affected by Smith-Magenis Syndrome:

•           To preserve and protect the health and promote the relief of individuals affected by SMS and their families.

•           To support families and individuals with SMS.

Raising Awareness:

•           To advance the education and knowledge of both medical professionals and the general public about SMS and its implications for the family.

•           To educate and increase the knowledge and understanding of SMS.

Building Futures:

•           To promote and support research into the management and effect of SMS.

•           To support and promote a sustainable, inclusive community.


•           To future-proof the charity through good governance, management and accountability


Our Projects:


•           Membership Management (Membership and customer resource management solutions)

•           Social meetings

•           Conferences

•           Internet  presence

•           Collaborative Networks (Network building)


•           Emotional support

•           Practical support

•           Provide guidance

•           Grants schemes

Promote Awareness/ Educate:

•           Access to information (Information update; accessible formats; target distribution; website; Published support information; international literature sharing)

•           Professional symposiums (Training days; regional symposiums)

•           Merchandise

•           Media Strategy (Public Relations Strategy; awareness campaigns; Jeans for Genes; Support My Smile; Charity Awards)


•           Patient Demographics (diagnosis profile request from genetic clinics)

•           Patient Registry

•           Registry of healthcare professionals with expertise / knowledge of SMS

•           Research Projects (Sleep security; gastro-reflux; melatonin and daytime behaviour; neurological investigation)


•           Development Strategy (Future planning; Trustee training and development)

•           Fundraising Strategy (Financial Management; Charity Fundraising Portals Optimisation)


12 Bankton Brae
West Lothian
EH54 9LA
United Kingdom

Phone: 01506429970
Contact form:

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