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

Our online support group:

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...

Unfortunately, there is no cure for CLOVES. Surgery and other types of medical interventions are the only treatments for CLOVES overgrowth, vascular anomalies and other related medical issues.

 Compassionate Use Access of PIQRAY (formerly BYL719/alpelisib) [7-9-19]

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 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 it.  

 

Visual of the common genetic mutations for Vascular Anomalies and Vascular Anomaly Syndromes - Arin Greene et al 2018.

 

Frequently Asked Questions – Compiled from doctors, families and people with CLOVES (Updated February 2017)

Is there a cure for CLOVES?