Proteus Syndrome Foundation

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  • PSF Home
  • About Us
    • Who We Are
    • Mission Statement
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • Published Papers
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Resources
      • Videos
      • Documentary
      • Glossary
  • 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

Documentary - Patient Number Five

This documentary has the power to help families searching for a cure and to end the Elephant Man disease irrevocably. Patient Number Five is being produced to save the lives of those diagnosed with Proteus Syndrome. With a new drug that is starting to show signs of efficacy (especially in children), there is reason to hope that doctors are on the verge of the first ever drug treatment.
  • Documentary producers have worked side by side with the Proteus Syndrome Foundation to help raise money to support families in need, allowing them to take part in clinical trials, and bringing awareness to this rare disease
  • Supporting this documentary will bring the recognition Proteus Syndrome deserves to the forefront, and aid in getting a drug approved for these patients
  • Awareness of the disease could save lives and speed the process of diagnoses
Click here for more information on Patient Number Five 
Click here for more information on Patient Number Five

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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
    • Mission Statement
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • Published Papers
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Resources
      • Videos
      • Documentary
      • Glossary
  • 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