Resources for Your Patients

What Is PROS?

PROS (PIK3CA-related overgrowth spectrum) is a broad spectrum of rare and diverse conditions caused by mutations in the PIK3CA gene.1,2 There are several specific PROS conditions and within each condition, every person is uniquely affected.1-6 Because of this, medical management for PROS needs to be tailored to the needs of each individual.7

The video below is designed for patients with PROS to learn more about their condition.

Access Relevant Patient Advocacy 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 congenital lipomatous overgrowth, vascular malformations, epidermal nevi, scoliosis/skeletal and spinal (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 megalencephaly-capillary malformation (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 (FAVA); 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 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.

 

Acronyms: PIK3CA = phosphatidylinositol-4,5-bisphosphate 3-kinase catalytic subunit alpha; PROS = PIK3CA-related overgrowth spectrum.

References: 1. Keppler-Noreuil KM, Rios JJ, Parker VER, et al. Am J Med Genet Part A. 2015;0(2):287-295. 2. Keppler-Noreuil KM, Sapp JC, Lindhurst MJ, et al. Am J Med Genet Part A. 2014;1713-1733. 3. International Society for the Study of Vascular Anomalies. ISSVA classification for vascular anomalies. Updated May, 2018. Accessed April 25, 2022. https://www.issva.org/UserFiles/file/ISSVA-Classification-2018.pdf. 4. Mahan MA, Amrami KK, Howe CBM, Spinner RJ. J Neurosurg. 2014;120:1118-1124. 5. Goss JA, Konczyk DJ, Smits P, et al. Clin Genet. 2020;97:736-740. 6. Rodriquez-Laguna L, Agra N, Ibanez K, et al. J Exp Med. 2019;216(2):407-418. 7. Mirzaa G, Conway R, Graham JM Jr, et al. PIK3CA-related segmental overgrowth. In: Adam MP, Ardinger HH, Pagon RA, et al, eds. GeneReviews. University of Washington, Seattle; 2013:1-30. Accessed April 25, 2022. https://www.ncbi.nlm.nih.gov/books/NBK153722/pdf/Bookshelf_NBK153722.pdf.