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.
Sustainability:
•          To future-proof the charity through good governance, management and accountability
Our Projects:
Connections:
•          Membership Management (Membership and customer resource management solutions)
•          Social meetings
•          Conferences
•          Internet presence
•          Collaborative Networks (Network building)
Support:
•          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)
Future:
•          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)
Sustainability:
•          Development Strategy (Future planning; Trustee training and development)
•          Fundraising Strategy (Financial Management; Charity Fundraising Portals Optimisation)
Address
12 Bankton Brae
Murieston
Livingston
West Lothian
EH54 9LA
United Kingdom
Phone: 01506429970
Website: http://www.smith-magenis.co.uk
Email: nigel@smith-magenis.co.uk
Contact form: https://smith-magenis.org/contact-us/