Download important information about PIK3CA-Related Overgrowth Spectrum (PROS)
Find a multidisciplinary team
The International Society for the Study of Vascular Anomalies (ISSVA) has compiled a list of multidisciplinary teams that treat vascular anomalies, which may be signs and symptoms of PROS. ISSVA believes that a team environment is the optimal setting for managing the complex problems that arise when treating vascular anomalies.
Click here to view the list of multidisciplinary care teams.
Watch helpful videos about PROS
PROS: Overview From an Expert
Learn from medical expert, Dr Kiersten W. Ricci, as she delves further under the PROS umbrella, explaining common PROS disorders and PROS diagnosis.
Pros Discuss PROS
Hear from experts about the impact of PROS on patients, the management landscape, and how a diagnosis can help.
Learn more about the epidemiology, unique features, and complications of 5 PROS disorders.
Mechanism of Disease
Discover how PIK3CA mutations are at the root of PROS disorders.
Access relevant patient advocacy groups
K-T Support Group
Find resources and support for people with Klippel-Trenaunay Syndrome and related conditions.
CLOVES Syndrome Community
Find resources, educational materials, a patient-led research network, and support for people with CLOVES syndrome and their families.
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.
Find information, resources, and patient-centered research for people with M-CM and their families.
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.
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.
GoPI3Ks is a UK-registered charity started in 2017 to support those worldwide living with the rare overgrowth condition, PROS. This is an acronym for PIK3CA-Related Overgrowth Spectrum, which is an umbrella term for a number of conditions affected by a mutation in the PIK3CA growth gene. Our aim is the prevention or relief of poverty for the public benefit of persons in need with PROS in particular by making grants to them. We advance the education of the general public and persons with PROS in any part of the world relating to PROS in particular, but not exclusively, by raising awareness and providing information and educational materials.
Associazione Italiana Macrodattilia e PROS
Our patient-led organization was started in 2017 by parents of children with macrodactyly and now provides support to persons with all PIK3CA-related conditions and their families who live in Italy. We have a Scientific Committee and cooperate with various clinicians, researchers, and clinical centers with expertise in our conditions. We are committed to mutual aid, support and information for families, support for research, and collaboration with clinical centers and other patient groups.
All organizations listed are not-for-profit, 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.