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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
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


Learn more about CLOVES syndrome through The Life Of Riley: www.wbur.org/series/the-life-of-riley





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

M-CM Twitter page:
twitter.com/mcmdotnet



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: overgrowthstudy@medschl.cam.ac.uk

or alternatively via Facebook: www.facebook.com/segmental.overgrowthstudy

or follow them on Twitter: twitter.com/OvergrowthStudy