family weekend


....Family Weekend 2015 at Aylesbury Bucks....BOOK NOW....01785 661263

family photoWelcome to the UK support group for families and individuals affected by Proteus syndrome. We hope that you will take some time to browse our pages and find out a bit about this rare syndrome and what we as a support group do. You can also read a personal perspective on Proteus Syndrome in Your Stories.


Our research team are now ready to start testing Proteus and KT patients for the genetic mutations, including the AKT1 gene, recently identified as being a major contributor to the cause of Proteus Syndrome - see our Research page - please remember that the diagnostic criteria for Proteus Syndrome in this country has differed from that in America....KT patients are also being tested for the AKT1 gene mutation - more news on our Research page.

If you have any comments or would like further information, you can contact us at:

If you or your family wish to join the Proteus Family Network UK, simply download the PDF application form here

Are you an adult with Proteus Syndrome....? If so YOU can help.....

Registered Charity 1098608
Secretary: Jean Harrison, 10 Overhill Road, Weeping Cross, Stafford, ST17 0QA
01785 661263,