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 *link currently unavailable – waiting on update*
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

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

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

Segmental Overgrowth Study


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

or alternatively via Facebook:

or follow them on Twitter:



Here is another support group run by Linda Roksund
WonderFIL smiles is a Facial Infiltrating Lipomatosis community(FIL).

FIL is also a PROS condition.


Macrocephaly-capillary malformation (M-CM):

M-CM Twitter

A local group to me called PENDLE POWERFEST  do good work for local 

community by helping raise funds, please check out their website: