Explore a variety of useful resources to help you navigate your condition

  • Contact a multidisciplinary vascular abnormalities clinic or children's hospital

  • Download important information about PIK3CA-Related Overgrowth Spectrum:

 

A Guide for Patients and Caregivers

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  • Connect with one of these support groups:

 

K-T Support Group

Find resources and support for people with Klippel-Trenaunay Syndrome and related conditions.

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CLOVES Syndrome Community

Find resources, educational materials, a patient-led research network, and support for people with CLOVES syndrome and their families.

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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) (previously known as lymphangiomatosis), kaposiform lymphangiomatosis (KLA), Gorham-Stout disease (GSD), and central conducting lymphatic anomaly (CCLA) (previously known as lymphangiectasia), 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.

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M-CM Network

Find information, resources, and patient-centered research for people with M-CM and their families.

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WonderFIL smiles

WonderFIL smiles is a global community for those affected by Facial Infiltrating Lipomatosis (FIL). Our goal is to support people with FIL and their families, and to empower them with information, knowledge, and connectivity.

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Project FAVA

Project FAVA is a 501(c)(3) nonprofit patient advocacy group that promotes awareness of fibroadipose vascular anomalies; educates patients, their families, and the global community; and provides helpful resources to those with FAVA.

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All organizations listed are not-for-profit and/or government agencies, and are independent from Novartis Pharmaceuticals Corporation. Novartis has no financial interest in any organization listed, but may provide occasional funding support to these organizations. All descriptions are copyright of the respective organizations.

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