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Proteus Syndrome Foundation

Welcome to the Proteus Syndrome Foundation (PSF). We are composed of families who connect with each other through the foundation and professionals who work tirelessly to help find effective treatments for Proteus. The PSF provides support through family conferences, family sharing through our (new) PSF Forum on our web page, and grants for families in need of assistance. Proteus syndrome can be an isolating and scary syndrome but as we come together under the PSF umbrella, we will never stand alone.   

What is Proteus Syndrome?

Proteus Syndrome is a condition which involves atypical growth of the bones, skin and head, and can lead to a variety of other symptoms. The condition is caused by a genetic mutation in AKT1, an important gene that helps to regulate the growth of cells. Now that genetic testing for the AKT1 mutation is available, it is important to get tested. In the spring of 2019 the PSF will be able to offer this confidential testing to families.
Please contact the Proteus Syndrome Foundation to learn more. 

PSF Family Conference

The next PSF Family Conference will be held on TBD, 2021. More information coming soon. 
Watch the video of Dr. Leslie Biesecker’s 2017 Proteus Syndrome Family Conference presentation on ARQ092:
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Patient Number Five

Patient Number Five is a documentary that follows people diagnosed with Proteus Syndrome as they enter clinical trials for a new drug miransertib (formerly called ARQ092). This new drug could be the first approved treatment that patients in critical condition desperately need.
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Contact Registry

The Proteus Syndrome Foundation Contact Registry will be used to inform individuals with Proteus syndrome and their guardians about:
  • Discoveries about Proteus syndrome that may impact care decisions
  • Opportunities to participate in research
  • Opportunities to contribute data
 There is no cost to you: the costs are supported by the Proteus Syndrome Foundation. Participation is voluntary and you can choose to withdraw from the registry at any time. 
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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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