PRISMS serves as a central clearinghouse for information about Smith-Magenis Syndrome (SMS), providing a range of programs and services to enhance the lives of persons with SMS through education, awareness, and research.

PRISMS believes education empowers.

We support education in a variety of ways, including:

  • Maintaining, the most comprehensive resource dedicated to SMS with research articles, newsletters, networking opportunities and more!
  • Publishing resources including “On the Road to Success with SMS: A Guidebook for Schools” (available in 5 translations) and “A Smith-Magenis Guidebook: Exploring Adult Residential Settings”
  • Hosting an international educational and family support conference; the biennial event is the largest conference dedicated to SMS
  • Authoring PRISMS Spectrum Journal, a quarterly newsletter containing the latest on therapies, family meet-ups, and organizational activity
  • Providing telephone/email support for families, including access to a genetic counselor familiar with SMS
  • Connecting SMS families around the world through the Regional Representative program

PRISMS believes awareness creates
understanding and opportunity.

We support awareness in a variety of ways, including:

  • Coordinating and leading the International Partnership Program comprised of SMS support organizations around the world
  • Creating and distributing SMS awareness materials including informational brochures, bookmarks, wristbands, t-shirts, and compassion cards
  • Facilitating social media campaigns through Facebook, Twitter, Instagram, and Pinterest pages
  • Running large annual SMS awareness campaigns including PRISMS Birthday (Feb. 4), Rare Disease Day (Feb. 28/29), and participating in SMS Awareness Day (Nov. 17)
  • Providing materials and promotional products on SMS for presentations at schools, universities, hospitals, conference and more

PRISMS believes research leads to answers.

We support research in a variety of ways, including:

  • Creating and maintaining a Professional Advisory Board comprised of leading medical and scientific experts in SMS
  • Sponsoring and hosting the International SMS community, the only event of its kind focused on SMS, supporting the advancement of research for the entire SMS community
  • Maintaining a database of registered SMS families
  • Investing in research through funding towards the launch of an SMS patient registry, support of a postdoctoral fellowship program, scholarships for graduate students to attend an SMS research event and more
  • Promoting family access to current opportunities to participate in ongoing SMS research studies

Annual Reports

At PRISMS, we are committed to complete transparency by making our financial records and programmatic operations open to the public for review and inspection. It is our responsibility to ensure funds received facilitate our ultimate goals of support and research in service to the SMS community.