Adenoid Cystic Carcinoma Organization International

Adenoid cystic carcinoma (ACC) is a rare form of cancer that most commonly develops in the salivary glands or other regions of the head and neck.  Because it occurs within the secretory glands, it can also occur in other parts of the body, such as the breast, skin, cervix in females, prostate gland in males, and various other areas. ACC of the salivary glands, the most common form of the disease, is thought to account for approximately 25 percent of malignant salivary gland tumors. It typically develops from early to late adulthood and there is no cure.

Because ACC is so rare, many patients are often misdiagnosed for years. Although each patient’s situation is different, the current standard of care for newly-diagnosed ACC patients usually involves surgery followed by radiation.  This form of cancer may have a tendency to recur later at the site where it first developed (local recurrence) and in approximately 50% of patients, ACC spreads to distant bodily sites, particularly the lungs (metastatic disease).  While there is no cure, the scientific community has learned a great deal over the past two decades and new hope exists for those with advanced disease.

Adenoid Cystic Carcinoma Organization International is the only non-profit charity supporting all international patients with ACC.  Our purpose is to create a worldwide community of ACC patients and supporters who share information, support, and hope while working together to develop a cure. for ACC. Resources and patient support groups can be found on the website http://www.accoi.org and social media outlets such as https://www.facebook.com/accoi/