What is Proteus Syndrome?
Proteus Syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms. At this time there are over 120 documented cases worldwide. However, not all cases of proteus syndrome are documented, therefore it is unknown how many individuals have this syndrome. The syndrome became widely known when it was determined that Joseph Merrick (the patient depicted in the play and movie “The Elephant Man”) had severe Proteus Syndrome or Elephant Man Syndrome rather than neurofibromatosis as was initially suggested.
Latest NewsWatch Dr. Leslie Biesecker’s 2017 Proteus Syndrome Family Conference presentation:
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Patient Number FiveTreatment for Proteus Syndrome:
Patient Number Five is a documentary that follows people diagnosed with Proteus Syndrome (the same disease the Elephant Man was diagnosed with), as they enter clinical trials for a new drug ARQ092. This new drug could be the cure that patients in critical condition desperately need. COLUMN WITH BACKGROUND COLOR |
Contact RegistryThe Proteus Syndrome Foundation Contact Registry will be used to inform individuals with Proteus syndrome and their guardians about:
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