Proteus Syndrome Foundation

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  • PSF Home
  • About Proteus
    • Newly Diagnosed
    • Genetic Testing
    • Clinical Research for Proteus Syndrome Genetic Testing
    • Glossary
  • About PSF
    • Mission Statement
    • Board of Directors
    • Medical Advisory Board
  • Clinical Trials
    • What Are Clinical Trials?
    • How To Get Involved
  • Resources
    • Current Events
    • PSF Conference
      • Facing Challenges
    • PSF Publications
    • Articles
    • Videos
    • Links
  • Family Support
    • Family Assistance Program
    • The Jackie Johnson Sparkle Grant
    • Fundraising
  • Documentary
  • Stay Up-To-Date
  • PSF Forum Login
    • Forum Submission
    • Forum Articles

How To Get Inolved

The clinical trials at the NIH are entering Phase 2. If you would like to be considered for Phase 2 please Contact: Kim Hoag-Green. 


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The Proteus Syndrome Foundation, a 501c3 not-for-profit organization, is dedicated improving the lives of Proteus patients by funding AKT1 research. We focus on providing family support in the form of education and networking individuals living with Proteus syndrome with other families and medical professionals.
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In Loving Memory of
Alexander Hoag
7/5/90 - 9/20/99
"He did a lot in 9 short years."
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  • PSF Home
  • About Proteus
    • Newly Diagnosed
    • Genetic Testing
    • Clinical Research for Proteus Syndrome Genetic Testing
    • Glossary
  • About PSF
    • Mission Statement
    • Board of Directors
    • Medical Advisory Board
  • Clinical Trials
    • What Are Clinical Trials?
    • How To Get Involved
  • Resources
    • Current Events
    • PSF Conference
      • Facing Challenges
    • PSF Publications
    • Articles
    • Videos
    • Links
  • Family Support
    • Family Assistance Program
    • The Jackie Johnson Sparkle Grant
    • Fundraising
  • Documentary
  • Stay Up-To-Date
  • PSF Forum Login
    • Forum Submission
    • Forum Articles