Welcome 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. Don´t miss the latest news in our newsletter. You can also read a personal perspective on Proteus Syndrome in Your Stories.

Charity Fun Day

Join us for a day of fun for all the family. The day will start with a football match between the White Hart and the Royal Mail at Thundersley Junior School. Then over to The White Hart where there will be entertainment; Bouncy Castle, Face Painting, Childrens Raffle and Hog Roast. Then in the evening for the adults we will be joined by Mischief bringing us a set of awesome rock anthems, old and new and a raffle with some amazing prizes!!!!

Breaking News.....

...American research team identify gene mutation AKT1 as the cause of Proteus Syndrome.....follow this link for more information: http://www.genome.gov/27544865

More news to follow and information being mailed out to members....please remember that the diagnostic criteria for Proteus Syndrome in this country has differed from that in America , so we wait to see how this affects our members....the same gene mutation is also being tested on KT patients, so watch this space....

If you have any comments or would like further information, you can contact us at: info@proteus-uk.org

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.....