OTHER SUPPORT GROUPS.
The following are links to various websites and groups that support those living with or affected by different types of overgrowth conditions:
Proteus Syndrome Foundation *link currently unavailable – waiting on update*
For those living with and/or supporting those with the AKT1 mutation
http://www.emedicine.com/ped/topic1912.htm eMedicine World Medical Library: Proteus Syndrome
CLOVES Syndrome Community
Another group set up by Kristen Davis with an aim to support families, educate & promote research is as follows: https://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
There is also a message board at:www.inspire.com/groups/cloves-syndrome-community
Segmental Overgrowth Study
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.
“Promoting knowledge, awareness and patient-centered research about macrocephaly-capillary malformation syndrome to improve the lives of patients and their families” https://m-cm.net/
The Italian association for those living with PROS: https://www.associazione-nazionale-macrodattilia.org/