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Welcome! You are probably visiting this page because you or someone you know was recently diagnosed with CLOVES Syndrome or PIK3CA Related Overgrowth Spectrum (PROS). We would like to welcome you to our community and share with you all of the resources we have to offer.

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CLOVES Syndrome is a recently described overgrowth syndrome with complex vascular anomalies. CLOVES stands for Congenital, Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/Skeletal/Spinal anomalies. The syndrome was described independently by Saap et al. and Alomari [1,2]. The syndrome shows no inheritance among families of affected patients.

CLOVES syndrome is rare and very variable; ranging from mild to severe. The common features in most patients allow for proper diagnosis and distinction from other syndromes. The most consistent features of the...

PIK3CA-related overgrowth spectrum (PROS) is an umbrella term for rare syndromes characterized by malformations and tissue overgrowth caused by somatic mutations in the PIK3CA gene. In PROS diseases, malformations are seen in several different tissues such as skin, vasculature, bones, fat and brain tissue depending on the specific disease.

Unfortunately, there is no cure for CLOVES. Surgery and other types of medical interventions are the primary treatments for CLOVES overgrowth, vascular anomalies and other related medical issues. Please read below about new targeted treatment medications to treat CLOVES/PROS. 

Compassionate Use Access of PIQRAY (formerly BYL719/alpelisib) [7-9-19]The Novartis Managed Access Program (MAP) for PIQRAY use in PROS is available to patients in the US where PIQRAY is available for commercial use (as well as other countries where not approved). The FDA approved PIQRAY for HR+/HER2- advanced...

Clinical Practice Guidelines for CLOVES Syndrome - Vascular Anomalies Center, Boston Children's Hospital Imaging Guidelines for Vascular Anomalies developed by Children's Hospital Boston - Guidelines for imaging with MRI, ultrasound, CT and angiogram when indicated.

Genetic testing for CLOVES Syndrome and PROS conditions, is more complicated than traditional genetic testing.  Many healthcare providers are unfamiliar with what mutations to test for and what samples are needed.

 

Genetic testing guidance from M-CM Network Website 

Genetic testing for CLOVES Syndrome/PROS is more complicated than traditional genetic testing.  Many heathcare providers are still unfamiliar with what mutations to test for and what samples are needed.

Frequently Asked Questions – Compiled from doctors, families and people with CLOVES (Updated February 2017) Is there a cure for CLOVES?

COVID-19 Frequently Asked Questions for Complex Vascular Anomalies

The complex vascular anomalies community advocates have jointly collaborated with our medical advisors to develop a FAQ information sheet for COVID-19 information as it relates to our populations. Please remember this is for general information purposes only. It is not intended to be a substitute for professional medical advice, diagnosis or treatment.

Specific situations might cause a variance in response, and if you are not sure, always seek the advice of your physician or other health care provider as they...