Proteus Syndrome Foundation

      Donate       

Patient Registry 

Connect With Us

    UK Chapter    

  • PSF Home
  • 2022 Conference Presentations
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • Published Papers
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Resources
      • Videos
      • Documentary
      • Glossary
    • Covid 19 and Proteus Syndrome
  • 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
  • PSF Home
  • 2022 Conference Presentations
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • Published Papers
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Resources
      • Videos
      • Documentary
      • Glossary
    • Covid 19 and Proteus Syndrome
  • 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

Articles

Below are links to various articles on Proteus Syndrome

NEW ARTICLE: First evidence of a therapeutic effect of miransertib in a teenager with Proteus syndrome and ovarian carcinoma.
Download Article

Cancer drug reduces pain, improves symptoms in people with Proteus Syndrome. ​

Read article online

Proteus Syndrome - Revised Biesecker LG, Sapp JC. Proteus Syndrome. 2012 Aug 9 [updated 2019 Jan 10]. In:Adam MP, Ardinger HH, Pagon RA, Wallace SE, Bean LJH, Stephens K, Amemiya A,editors. GeneReviews® [Internet]. Seattle (WA): University of Washington,
Seattle; 1993-2019.
Download Article
​

Progressive Overgrowth Of The Cerebriform Connective Tissue Nevus In Patients With Proteus Syndrome
Thomas M. Beachkofsky, CAPT, USAF, MC, FS,a Julie C. Sapp, MS, CGC,b Leslie G. Biesecker, MD,b and Thomas N. Darling, MD, PhDa
Bethesda, Maryland
Download Article

Radiologic Manifestations of Proteus Syndrome
Carlos A. Jamis-Dow, MD | Joyce Turner, MS | Leslie G. Biesecker, MD Peter L. Choyke, MD
Download Article

A Mosaic Activating Mutation in AKT1 Associated with the Proteus Syndrome
The New England Journal Of Medicine
Download Article

Assessment And Management Of The Orthopedic And Other Complications Of Proteus Syndrome
Laura L. Tosi | Julie C. Sapp | Elizabeth S. Allen | Regis J. O’Keefe | Leslie G. Biesecker
Download Article
 National Center for Biotechnology Information
GeneReviews Article on Proteus Syndrome


The Challenges Of Proteus Syndrome: Diagnosis And Management
European Journal of Human Genetics (2006) 
Download Article

Myocardial Fat Overgrowth in Proteus Syndrome
H Hannoush, V Sachdev, A Brofferio, AE Arai, G LaRocca, J Sapp, S Sidenko, C Brenneman, LG Biesecker, and KM Keppler-Noreuil
Cardiovascular and Pulmonary Branch, National Heart Lung and Blood Institute, National Institutes of Health, Bethesda, MD
Genetic Disease Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD
​Download Article

Diseases Overgrowth, Under Way In Rome And Catania A Study For A Possible Drug Therapy
Read Article Online

Study of ARQ 092 in Patients With Overgrowth Diseases and Vascular Anomalies
Read Article Online

ArQule Policy on Investigational Product Use Outside of a Clinical Trial
Read Article Online

Donate

Picture

Follow Us

Picture
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."
Vertical Divider
  • PSF Home
  • 2022 Conference Presentations
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • Published Papers
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Resources
      • Videos
      • Documentary
      • Glossary
    • Covid 19 and Proteus Syndrome
  • 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