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Diseases Studied

The Rare Diseases Clinical Research Network is an NIH-funded research network of 21 active consortia or research groups working to advance treatment for diseases that are rare. Use the search tools on this page to find the diseases we currently study. You can reach out to the indicated consortia or research groups for more information on those diseases and studies underway.

This network focuses on clinical research and does not generally support clinical care outside of research activities. To learn about other rare diseases, please visit the Genetic and Rare Diseases Information Center (GARD), which is an NIH program that helps the public find reliable information about rare and genetic diseases. Their staff are specialists. Contact them at 1-888-205-2311 or email GARDinfo@nih.gov.

All Diseases > PIK3CA-Related overgrowth spectrum with vascular malformations

PIK3CA-Related overgrowth spectrum with vascular malformations

Disease Category: Vascular Anomalies

PIK3CA Related Overgrowth Syndrome with Vascular Malformations (PROSvm) are made-up of a number of disorders that have tissue overgrowth and include vascular anomalies such as capillary, venous, lymphatic malformations that are caused by an overexpression of a somatic gene, PIK3CA.  These overgrowth disorders can cause pain, bleeding, infection, and dysfunction, leading to significant morbidity. 

Research groups studying this disease

Vascular Anomalies
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Advancing Rare Disorders: Vascular mAlformation Research Network with CaNVAS (ARDVARC)

Learn More from the Consortium
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The vision of CLOVES Syndrome Community is an improved quality of life for those living with CLOVES syndrome.   Our mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome.

The K-T Support Group serves as a vital lifeline for families and professionals navigating K-T/CLVM, empowering the community through education, connection, and a commitment to bridging the gap between today’s patient care and tomorrow’s cures.

We provide opportunities for education and awareness among families and the medical community with comprehensive and up-to-date information about M-CM. We work with affected families to advance research and understanding about M-CM to improve the lives of patients.

Empowering the fibro-adipose vascular anomaly (FAVA) community through outreach, education, and connection to researchers, medical organizations, and one another.