Other Support Groups


The following are links to various websites and groups that support those living with or affected by different subtypes of PROS (PIK3CA Related Overgrowth Spectrum)

CLOVES Syndrome Foundation:

A group set up by the Blankenship’s, the aim to search for a cure, the following is a link to the foundation: CLOVES Syndrome Foundation

There is also a Twiiter/X page: CLOVES Syndrome Foundation

CLOVES Syndrome Community:

A group set up by Kristen Davis with the aim to support families, educate & promote research: CLOVES Syndrome Community

Twitter/X: CLOVES Syndrome Community

Facebook page: CLOVES Syndrome Community

Facebook CLOVES community page: CLOVES Syndrome Community

WonderFIL Smiles:

A support group run by Linda Roksund: WonderFIL Smiles

WonderFIL Smiles is a Facial Infiltrating Lipomatosis community (FIL)

MCM Network

Promoting knowledge, awareness & patient centred research about Macrocephaly-Capillary Malformation Syndrome to improve the lives of patients & their families: M-CM Network


The Italiain association for those living with PROS: AIMP (PIK3CA)

KT Support Group

Support & rescources for those living with Klippel-Trenaunay Syndrome & related conditions: KT Support Group

Lymphangiomatosis & Gorham’s Disease Alliance: LGDA

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.

Project FAVA: Project Fava

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.


A patient organisation supporting those living with Hemangiomas, Vascular Malformations & Overgrowth Syndromes

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