Resources & Support
A guide for patients and caregivers
Explore the cause of PROS conditions, common features driven by the PIK3CA mutation, steps to diagnosis, and a helpful checklist.
Resources for your doctor
If your doctor wants to learn more about PROS, they can visit PROSspectrum.com.
Connect with one of these support groups:
 | K-T Support GroupFind resources and support for people with Klippel-Trenaunay Syndrome and related conditions. |
 | CLOVES Syndrome CommunityFind resources, educational materials, a patient-led research network, and support for people with CLOVES syndrome and their families. |
 | Lymphangiomatosis & Gorham’s Disease AllianceThe 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. |
 | M-CM NetworkFind information, resources, and patient-centered research for people with M-CM and their families. |
 | WonderFIL smilesWonderFIL 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. |
 | Project FAVAProject 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. |
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.
KTS (Klippel-Trenaunay Syndrome)
CLOVES syndrome (Congenital Lipomatous Overgrowth, Vascular malformations, Epidermal nevi, Scoliosis/skeletal and spinal)
ILM (Isolated Lymphatic Malformation)
MCAP or M-CM (Megalencephaly-Capillary Malformation)
HME (HemiMegalEncephaly)/DMEG (Dysplastic MEGalencephaly)/Focal cortical dysplasia type II
HHML (HemiHyperplasia-Multiple Lipomatosis)
FIL (Facial Infiltrating Lipomatosis)
FAVA (FibroAdipose Vascular Anomaly)
Macrodactyly
Muscular HH (HemiHyperplasia)
FAO (FibroAdipose hyperplasia or Overgrowth)
CLAPO syndrome (Capillary malformation of the lower lip, Lymphatic malformation of the face and neck, Asymmetry of the face and limbs, and Partial or generalized Overgrowth)
Epidermal nevus, benign lichenoid keratosis, or seborrheic keratosis
Other conditions may be identified and characterized as PROS. Talk to your doctor to find out if your condition is a PROS condition