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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.

Our online support group:

CLOVES Syndrome is an 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 syndrome are:

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 spectrum conditions, 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 research opportunities and new targeted treatment medications to treat CLOVES/PROS. 

Study Assessing the Efficacy, Safety and PK of Alpelisib (BYL719) in Pediatric and Adult Patients With PIK3CA-related Overgrowth Spectrum

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.

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

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.

We have a rapidly growing community of people with CLOVES and a network of supporters who want to learn more.  Awareness leads to action and to understanding more about the disease and the unique needs of our community.  We are thankful to the people with CLOVES who have shared their stories with us.

Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion for Vascular Anomalies. Researchers need information on COVID-19 and vascular anomalies.   If you have a vascular anomaly and contract COVID-19, please ask your doctor to complete the brief questionnaire below.   The SECURE-VA registry is a collaborative worldwide registry for healthcare providers to report COVID-19 in vascular anomaly patients. We hope to quickly characterize the impact of COVID-19 on people with vascular anomalies. The study is anonymous and meets exemption criteria under federal regulations.