Proteus Syndrome Foundation
Welcome to the Proteus Syndrome Foundation. 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, head and a variety of other symptoms. Now that genetic testing for the AKT1 mutation that causes Proteus syndrome 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.
Latest NewsClick here to see the newest clip of Patient Number Five.
PSF Family Conference will be October 25-26 with a casual social on Thursday evening 10/24. The conference will be held at the Hyatt Regency in Bethesda, MD. Registration forms will be on the site soon.
Watch the video of Dr. Leslie Biesecker’s 2017 Proteus Syndrome Family Conference presentation on ARQ092:
COLUMN WITH BACKGROUND COLOR |
Patient Number FiveTreatment for Proteus Syndrome:
Patient Number Five is a documentary that follows people diagnosed with Proteus Syndrome as they enter clinical trials for a new drug ARQ092. This new drug could be the cure that patients in critical condition desperately need. Video Documentary of ARQ092 Clinical Trials COLUMN WITH BACKGROUND COLOR |
Contact RegistryThe Proteus Syndrome Foundation Contact Registry will be used to inform individuals with Proteus syndrome and their guardians about:
COLUMN WITH BACKGROUND COLOR |
Get Involved
Parents |
Clinical Trials |
Donate |
