Cloves Syndrome Community

CLOVES Family Camp is an annual opportunity that focuses on community, connection, relaxation and fun.

An opportunity for patients, families, clinicians, researchers and stakeholders to gather together.

In 2021, we announced a partnership with AllStripes to create a database that will enable new PIK3CA-related overgrowth spectrum (PROS) research projects.

In 2020, we became one of thirty organizations in Chan Zuckerberg Initiative's Rare As One Network, working to create a patient-led collaborative research network .

Ongoing outreach to schools, organizations, hospitals and media outlets to raise awareness.

Back to School Bucks provides financial assistance related to apparel and shoe modifications, adaptive clothing and shoes in multiple sizes.

The International Scientific Meeting for PIK3CA Related Conditions is hosted and sponsored by CLOVES Syndrome Community.

The CLOVES Syndrome Community Contact Registry is used to inform individuals with CLOVES Syndrome and their guardians about:

1. Discoveries about CLOVES Syndrome and PROS that may impact care decision
2. Opportunities to participate in research
3. Opportunities to contribute data

CLOVES Syndrome (“CLOVES”) is a rare disorder. 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 CLOVES are: fatty truncal mass, vascular anomalies, aggressive overgrowth, abnormal extremities, scoliosis and skin abnormalities. CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-overgrowth spectrum or PROS. There are currently no approved therapies or clinical trials in place for the treatment for CLOVES. CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES.