Proteus Syndrome Foundation

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  • About Us
    • Who We Are
  • Fundraising Events
    • Event Photos
      • 2025 Camp Photos
      • 2025 Swing Fore Sunshine Photos
  • Ways to Help
    • Donate
    • The Jackie Johnson Sparkle Grant
  • Contact Us
  • Subscribe
  • Videos
  • PSF Patient Registry

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 [email protected]
​
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The Proteus Syndrome Foundation is a patient-led, global nonprofit dedicated to improving and extending the lives of individuals affected by Proteus syndrome. We accelerate progress toward effective treatments by funding AKT1 research, while directly supporting patients and families through education, community connection, and critical assistance programs. Through initiatives such as family conferences, summer camp, global peer networks, and medical support grants, we ensure that no family faces Proteus syndrome alone, and that every patient has access to the care, resources, and community they need to live fully.

​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 Proteus Syndrome
  • About Us
    • Who We Are
  • Fundraising Events
    • Event Photos
      • 2025 Camp Photos
      • 2025 Swing Fore Sunshine Photos
  • Ways to Help
    • Donate
    • The Jackie Johnson Sparkle Grant
  • Contact Us
  • Subscribe
  • Videos
  • PSF Patient Registry