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/
