CLOVES Awareness Day Date in the current year: August 3, 2024

Overgrowth syndromes are a group of rare genetic disorders that are characterized by an increase in the volume of tissues. Some of them are easily detectable at birth, while others manifest themselves later in life.

CLOVES syndrome is caused by mutations in the PIK3CA gene that is responsible for coding the protein of the same name, which participates in angiogenesis (the formation of new blood vessels from pre-existing vessels) and some other biological processes. It is linked to other overgrowth syndromes such as hemihypertrophy, Klippel–Trénaunay syndrom, Proteus syndrome, and Sturge–Weber syndrome.

CLOVES syndrome is believed to have been first described by German physician Hermann Friedberg in 1867. However, it wasn’t officially recognized until 2007. CLOVES is an acronym that describes the main symptoms of the syndrome; it stands for “Congenital, Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Spinal/Skeletal anomalies or Scoliosis”:

• Congenital means that people diagnosed with CLOVES are born with the syndrome, and some of its symptoms are already present at birth or even as early as in utero.
• Lipomatous means having to do with fat. Most people with CLOVES have a soft mass of fat tissue, often visible on the abdomen, back, and/or legs.
• Overgrowth means that some areas of the bodies of people with CLOVES (usually hands or feet) grow at a faster rate than others.
• Vascular malformations are abnormalities of blood or lymph vessels, which can range from mild to complex in people with CLOVES.
• Epidermal nevi are flat or slightly raised chronic skin lesions.
• Spinal and skeletal anomalies in people with CLOVES include malformations in or around the spine, tethered cored syndrome, etc. Some people with CLOVES suffer from scoliosis.

People with CLOVES may exhibit other symptoms not covered in the acronym, ranging from various skin anomalies to absence of a kidney.

CLOVES syndrome is extremely rare. Only about 200 people from all over the world have been diagnosed with this disorder. Its rarity means that research isn’t adequately funded, which, in turn, means that families of CLOVES patients often don’t have access to information resources, support, and effective treatment options.

CLOVES Awareness Day was created to raise awareness of the syndrome and support people with CLOVES and their families. It is heavily promoted by CLOVES Syndrome Community (CSC), an organization that was started by the mother of a child diagnosed with CLOVES in 2009. The main goal of CSC is to provide CLOVES patients and their families with the support and resources they need.

How to observe CLOVES Awareness Day? You can show solidarity with CLOVES patients by wearing green or pinning a green awareness ribbon to your shirt, donating to an organization that supports CLOVES research and patients, and spreading the world on social media with the hashtag #CLOVESAwarenessDay.