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The following are links to various websites and groups that support those
living with or affected by different types of overgrowth conditions:


Proteus Syndrome:

Proteus Syndrome Foundation
For those living with and/or supporting those with the AKT1 mutation

Proteus Syndrome UK Facebook page:

Proteus Syndrome Foundation USA
Support group in Germany

eMedicine World Medical Library: Proteus Syndrome

CLOVES Syndrome:

This group was set up by Adriennne and Chris Blankenship,
the aim to search for a cure, here is the link to the foundation:

There is also a Twitter 

CLOVES Syndrome Community:

Another group set up by Kristen Davis with an aim to
support families, educate & promote research is as follows:

They also have a twitter page:

There is also a facebook fan page at the following link:

As well as a Facebook CLOVES community page:

There is also a message board at:

Learn more about CLOVES syndrome through The Life Of Riley:

Segmental Overgrowth Study:

This research study is based in Cambridge, United Kingdom
and organised by Dr Robert Semple and Dr Victoria Parker.

If you are interested in the research study you can contact the team on:

or alternatively via Facebook:

or follow them on Twitter:


Here is another support group
WonderFIL smiles is a Facial Infiltrating Lipomatosis community(FIL). FIL is also a PROS condition.