Proteus Syndrome Foundation

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  • PSF Home
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • 2025 CAMP
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Videos
    • 2024 Conference Presentations
    • Glossary
  • Researchers & Physicians
    • Proteus 101
    • Clinical Trials & Research Pipeline
    • Genetic Testing
    • Resources
  • Ways to Help
    • Donate
    • Fundraise
    • The Jackie Johnson Sparkle Grant
  • Patient Registry
  • Contact Us
  • Subscribe

UK Chapter

​Proteus Syndrome Foundation – UK Chapter
 
Chairperson and Support Group contact – Tracey Whitewood-Neal – you can contact me at [email protected] or by writing to:
 
2 Watermill Close
​Bexhill
East Sussex
Tn39 5ej
 
We are nationally registered charity – number 1077796 - https://register-of-charities.charitycommission.gov.uk/charity-search/-/charity-details/3964150
 
I set up the charity when I found out my son Jordan, born in 1995, had the condition. I run the UK branch of the Foundation, working in collaboration with Kim Green (the founder) and the team at the National Institutes of Health USA.
 
The charity provides support and guidance and can assist in putting families in touch with each other.
 
Donations
 
You can arrange a bank transfer:

National Westminster bank 
Sort code 60 10 15
Account number 62208624

Or cheque to:
 
PSF UK
The Old Coach House
St James Road
Hastings
East Sussex
TN34 3LH

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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.

​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."
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  • PSF Home
  • About Us
    • Who We Are
    • Board of Directors
    • Medical Advisory Board
    • Partners
  • 2025 CAMP
  • Patients & Families
    • About Proteus Syndrome
    • Clinical Trials
    • Genetic Testing
    • Videos
    • 2024 Conference Presentations
    • Glossary
  • Researchers & Physicians
    • Proteus 101
    • Clinical Trials & Research Pipeline
    • Genetic Testing
    • Resources
  • Ways to Help
    • Donate
    • Fundraise
    • The Jackie Johnson Sparkle Grant
  • Patient Registry
  • Contact Us
  • Subscribe