Proteus Syndrome Foundation

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  • PSF Home
  • 2022 Conference Presentations
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • Published Papers
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Resources
      • Videos
      • Documentary
      • Glossary
    • Covid 19 and Proteus Syndrome
  • Researchers & Physicians
    • Proteus 101
    • Clinical Trials & Research Pipeline
    • Genetic Testing
    • Resources
  • Ways to Help
    • Donate
    • Fundraise
    • Family Assistance Program
    • The Jackie Johnson Sparkle Grant
  • Contact Us
  • Subscribe

PSF Forum

The PSF Forum is designated for PS parents and patients to share their own personal surgical information with other families. Due to new surgical techniques early surgeries on certain overgrowths are resulting in positive results.
The forum is searchable by keywords. So if you are looking for vascular - then type in the word vascular and anything mentioning that word will come up in your search. 
To make first hand family to family  surgical information accessible for PS families the PSF has added this password protected page. Simply sign up and once verified that you are a PS family you will be given a password.
​This is for families/patients only. 
All comments to better this experience are welcome. Please email Kim@proteus-syndrome.org
​
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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
  • 2022 Conference Presentations
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • Published Papers
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Resources
      • Videos
      • Documentary
      • Glossary
    • Covid 19 and Proteus Syndrome
  • Researchers & Physicians
    • Proteus 101
    • Clinical Trials & Research Pipeline
    • Genetic Testing
    • Resources
  • Ways to Help
    • Donate
    • Fundraise
    • Family Assistance Program
    • The Jackie Johnson Sparkle Grant
  • Contact Us
  • Subscribe