• Home
  • About MSS
    • What is MSS?
    • Life with MSS
    • Treatment & Management
    • Symptoms & More
    • The NFIX Gene
  • Resources
    • Newly Diagnosed?
    • Media & Publications
    • Articles & Research
    • Helpful Links
    • MSS Patient Registry
  • Rare Disease Day
  • Advocacy
  • Support MSS-USA
  • Photo Gallery
  • Memorial
  • More
    • Home
    • About MSS
      • What is MSS?
      • Life with MSS
      • Treatment & Management
      • Symptoms & More
      • The NFIX Gene
    • Resources
      • Newly Diagnosed?
      • Media & Publications
      • Articles & Research
      • Helpful Links
      • MSS Patient Registry
    • Rare Disease Day
    • Advocacy
    • Support MSS-USA
    • Photo Gallery
    • Memorial
  • Home
  • About MSS
    • What is MSS?
    • Life with MSS
    • Treatment & Management
    • Symptoms & More
    • The NFIX Gene
  • Resources
    • Newly Diagnosed?
    • Media & Publications
    • Articles & Research
    • Helpful Links
    • MSS Patient Registry
  • Rare Disease Day
  • Advocacy
  • Support MSS-USA
  • Photo Gallery
  • Memorial

Our Mission

Provide Support

Advance Research

Advance Research

MSS is rare, but there is strength in numbers! We strive to provide support and connection for families online and through organized meetups.

Advance Research

Advance Research

Advance Research

MSS-USA hosts formal advisory boards to assure equity and perspective in our research efforts. Our partnership with the National Organization of Rare Disorders (NORD) will open new doors for researching MSS.

Foster Advocacy

Advance Research

Foster Advocacy

We foster advocacy by sharing stories of our journeys, formally gathering information that will provide better understanding and increase awareness of MSS.

Global awareness day 2025

support MSS-USA

Your generous donation can help us fund our mission to improve the lives of children and adults living with Marshall-Smith Syndrome through family support, research, and advocacy.


MSS-USA is 501(c)(3) tax-exempt public charity. For additional information, please refer to our "Support MSS-USA" page.

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Marshall-Smith Syndrome Organization of the USA

info@mss-usa.org


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