Proteus Syndrome Foundation

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  • PSF Home
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • 2025 CAMP
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Videos
    • 2024 Conference Presentations
    • Glossary
  • Researchers & Physicians
    • Proteus 101
    • Clinical Trials & Research Pipeline
    • Genetic Testing
    • Resources
  • Ways to Help
    • Donate
    • Fundraise
    • The Jackie Johnson Sparkle Grant
  • Patient Registry
  • Contact Us
  • Subscribe

Genetic Testing

Since the discovery that a mutation in the AKT1 gene causes Proteus, patients and families have the option to unergo genetic testing to confirm the diagnosis. A huge benefit to having genetic testing is that it can now help both doctors and patients to be sure that people are managed correctly and that the diagnosis is correct. 
Genetic Testing may be available too test for the AKT1 mutation. Please email Kim Green for further information. 

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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.

​Website Design by Timberline Webworks
Alex Hoag
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 Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • 2025 CAMP
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Videos
    • 2024 Conference Presentations
    • Glossary
  • Researchers & Physicians
    • Proteus 101
    • Clinical Trials & Research Pipeline
    • Genetic Testing
    • Resources
  • Ways to Help
    • Donate
    • Fundraise
    • The Jackie Johnson Sparkle Grant
  • Patient Registry
  • Contact Us
  • Subscribe