Links

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: www.facebook.com/groups/178991428879404/
 
      
http://www.proteus-syndrome.org
Proteus Syndrome Foundation USA

http://www.proteus-syndrom.de
Support group in Germany

http://www.emedicine.com/ped/topic1912.htm

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:clovesfoundation.org/

There is also a Twitter page:twitter.com/ClovesFdn 

 

CLOVES Syndrome Community

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

They also have a twitter page: twitter.com/CLOVESSyndrome

There is also a facebook fan page at the following link: www.facebook.com/CLOVEsSyndromeCommunity

As well as a Facebook CLOVES community page: www.facebook.com/WelcometoCLOVESCommunity

There is also a message board at:www.inspire.com/groups/cloves-syndrome-community

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: www.facebook.com/segmental.overgrowthstudy

or follow them on Twitter: twitter.com/OvergrowthStudy

WonderFIL

 

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

FIL is also a PROS condition.

MCM

Macrocephaly-capillary malformation (M-CM):
www.m-cm.net

M-CM Twitter page:twitter.com/mcmdotnet

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

community by helping raise funds, please check out their website: https://www.pendlepowerfest.com/