Proteus Syndrome Foundation

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  • PSF Home
  • About Proteus
    • Newly Diagnosed
    • Genetic Testing
    • Clinical Research for Proteus Syndrome Genetic Testing
    • Glossary
  • About PSF
    • Mission Statement
    • Board of Directors
    • Medical Advisory Board
  • Clinical Trials
    • What Are Clinical Trials?
    • How To Get Involved
  • Resources
    • Current Events
    • PSF Conference
      • Facing Challenges
    • PSF Publications
    • Articles
    • Videos
    • Links
  • Family Support
    • Family Assistance Program
    • The Jackie Johnson Sparkle Grant
    • Fundraising
  • Documentary
  • Stay Up-To-Date
  • PSF Forum Login
    • Forum Submission
    • Forum Articles

Family Assistance Program

The fund supports patients who have been diagnosed with Proteus syndrome and their families to offset the costs associated with treatment or management of Proteus syndrome. 
​
Grants:
​1. Incidental Grant: (patients can apply more than once for this grant)
Patients who have active medical needs which require out-of-pocket expenditures (such as shoe modifications, therapy appointments, etc.) are encouraged to apply for an Incidental Grant.  Families are encouraged to re-apply for these incidental grants when need arrives. ​

2. Dedicated Grant: Financial Assistance to help defray specific costs associated with receiving treatment (such as transportation and lodging expenses) may also be available in the form of dedicated grants capped at $500.

2. Emergency Grant:
​Limited one-time emergency grants for non-treatment-related expenses may be available as well. Each patient/family must provide documentation of their diagnosis and specify which medical needs they need met in order to finalize their application.

For more information on genetic testing click here. 
To apply for funds from the PSF we will need a copy of a genetic test result confirming an AKT1 gene change.  
If you do  not have the documentation you can ask your geneticist for clinical testing and/or you can contact the research study at NIH. 

    Family Assistance Request Form

    Max file size: 20MB
Submit

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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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  • PSF Home
  • About Proteus
    • Newly Diagnosed
    • Genetic Testing
    • Clinical Research for Proteus Syndrome Genetic Testing
    • Glossary
  • About PSF
    • Mission Statement
    • Board of Directors
    • Medical Advisory Board
  • Clinical Trials
    • What Are Clinical Trials?
    • How To Get Involved
  • Resources
    • Current Events
    • PSF Conference
      • Facing Challenges
    • PSF Publications
    • Articles
    • Videos
    • Links
  • Family Support
    • Family Assistance Program
    • The Jackie Johnson Sparkle Grant
    • Fundraising
  • Documentary
  • Stay Up-To-Date
  • PSF Forum Login
    • Forum Submission
    • Forum Articles