PRISMS IPP 2016 Logo

PRISMS is dedicated to strengthening the Smith-Magenis Syndrome community, creating a global network of resources and associations. As part of this dedication, this year, 2016, PRISMS is launching our International Partnership Program, seeking partnerships with international organizations dedicated to serving SMS families.

In recognition of the desire to unite, strengthen and reinforce the Smith-Magenis Syndrome community around the world, Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS) seeks to create concrete partnerships with SMS associations holding common objectives.

PRISMS is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS. In pursuit of this mission, PRISMS seeks international partner organizations dedicated to pursuing the same initiatives to the SMS community.

PRISMS does not promote the use of the Parents and Researchers Interested in Smith-Magenis Syndrome name or branding in whole or in part by an affiliate organization, however PRISMS does support collaboration with SMS associations dedicated to benefiting the lives of those affected by SMS and their loved ones.

Organized and incorporated in 1993 to provide resources and support to SMS families, PRISMS is uniquely qualified to serve as an organizational hub for all international SMS associations and organizations, connecting information, providing collaboration for research, and promoting global awareness through cooperating partners.

PRISMS hopes to continue developing partnerships with Smith-Magenis Syndrome associations throughout the world.

Memorandum of Understanding

To cement PRISMS affiliation with individual SMS associations, PRISMS proposes a memorandum of understanding between PRISMS and the international partner organization outlining the basis of the terms of agreement between the two partners.

Memorandum of Understanding
Between
Parents and Researchers Interested in Smith-Magenis Syndrome
And
International Partner Organization

PRISMS and "International Partner Organization" recognize that Smith-Magenis Syndrome is a global public health challenge that affects families around the globe. Together these two organizations want to raise awareness of the common issues that people living with SMS and their families face irrespective of where they live in the world.  Global cooperation benefits the entire Smith-Magenis Syndrome community. It is PRISMS hope that this partnership will lay the groundwork for future joint initiatives and increased transatlantic collaboration for the entire Smith-Magenis Syndrome community.

PRISMS and "International Partner Organization" agree that the following are key common objectives:

  • Strengthening the voice of people living with Smith-Magenis Syndrome
  • Addressing Smith-Magenis Syndrome as a genetic condition which requires attention by researchers, educators, physicians, and the broader community
  • Promoting Smith-Magenis Syndrome research collaboration and funding
  • Enabling earlier diagnosis of Smith-Magenis Syndrome through promotion of information and encouraging genetic testing
  • Promoting methods to improve Smith-Magenis Syndrome individuals’ quality of life
  • Providing wider access to quality information on Smith-Magenis Syndrome
  • Sharing family experience on coping and caring for an individuals affected by Smith-Magenis Syndrome
  • Expanding the Smith-Magenis Syndrome community to encapsulate all stakeholders in the fight to promote education, awareness, and research of SMS

"International Partner Organization" agrees to:

  • Be listed as an affiliate organization of Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)
  • Contribute $100 USD Affiliate Membership Fee annually
  • Receive one complimentary registration to PRISMS International Conference
  • Receive one complimentary registration to PRISMS Research Symposium
  • Collaborate with PRISMS on SMS Awareness Day each year promoting the day in "International Community"
  • Collaborate with PRISMS on raising awareness for SMS on Rare Disease Day each year promoting the day in "International Community"
  • Collaborate with PRISMS on ensuring that relevant publications and resources are accessible by “International Community” families
  • Collaborate with PRISMS to provide recommendations for PRISMS Professional Advisory Board and engagement in the PRISMS Research Symposium and International Conference to ensure that all relevant voices are heard and engaged
  • Nominate a representative of "International Partner Organization" to serve as a PRISMS Regional Representative for "International Community"
  • Raise funds, when appropriate, to support PRISMS work to raise awareness, increase education, and promote research to support the entire SMS community
  • Promote PRISMS membership program to international families and professionals when appropriate

PRISMS agrees to:

  • List "International Partner Organization" as an affiliate organization of Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)
  • Provide updates to the SMS community via the Spectrum Journal on "International Partner Organization" activities as is necessary and relevant
  • Provide one complimentary registration to PRISMS International Conference
  • Provide one complimentary registration to PRISMS Research Symposium
  • Collaborate with "International Partner Organization" on SMS Awareness Day each year to ensure the day is recognized in "International Community"
  • Collaborate with "International Partner Organization" on raising awareness for SMS on Rare Disease Day each year promoting the day in "International Community"
  • Collaborate with "International Partner Organization" on ensuring that relevant publications and resources are accessible by "International Community" families
  • Collaborate with "International Partner Organization" to garner recommendations for PRISMS Professional Advisory Board and engagement in the PRISMS Research Symposium and International Conference to ensure that all relevant voices are heard and engaged
  • Accept a nomination from "International Partner Organization" for a representative of "International Partner Organization" to serve as a PRISMS Regional Representative for "International Community"
  • Brainstorm, when appropriate, on ideas to engage "International Partner Organization" in fundraising to support PRISMS initiatives to raise awareness, increase education, and promote research to support the entire SMS community

Both organizations agree to join forces to strengthen the common voice of people living with SMS, to promote SMS as an international public health priority, to enlarge outreach to SMS families, researchers, educators, and physicians, and to expand networking and knowledge sharing.


If you are a representative from an association or organization dedicated to Smith-Magenis Syndrome family support and are interested in learning more about the International Partnership Program, please contact Emily Fields, Executive Director, This email address is being protected from spambots. You need JavaScript enabled to view it..

General questions about PRISMS and this new program? Contact us at This email address is being protected from spambots. You need JavaScript enabled to view it..

PRISMS International Partners

Smith-Magenis Syndrome Australia

Smith Magenis México

Smith-Magenis Syndrome Foundation UK

Association Smith Magenis 17 France

Sirius e.V. Germany