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
Proteus Syndrome UK Facebook page: www.facebook.com/groups/178991428879404/
Proteus Syndrome Foundation USA
Support group in Germany
http://www.emedicine.com/ped/topic1912.htm eMedicine World Medical Library: Proteus 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: 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
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
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/
“Support and resources for people with Klippel-Trenaunay Syndrome and related conditions.” https://k-t.org/
Lymphangiomatosis & Gorham’s Disease Alliance
The mission of the LGDA is to bring hope to and improve the quality of life of patients with generalized lymphatic anomaly (GLA), also known as lymphangiomatosis, Kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD) by providing support to members of the patient community and their families; education for the community, professionals, and the general public; and supporting research that will improve understanding of these diseases and establish best practices for their diagnosis and management.
A fibro-adipose vascular anomaly (FAVA) is a rare vascular anomaly occurring when the body’s own tissue infiltrates a muscle, creating a tumor-like mass typically found in one or more limbs.
Our primary goals are to:
Establish a central database of FAVA patients;
Establish a central location for disseminating information among our members;
Let our members know of advancements in research and provide them an opportunity to play a role in that research if they so choose; and
Develop and cultivate an active relationship between FAVA patients, the medical community, and researchers.