quick facts about ACC

Adenoid cystic carcinoma (ACC) is a cancer of secretory glands, typically originating in the head and neck region, but also found in the breast, skin and elsewhere.


ACC is diagnosed in about 4 of every 1 million people each year and afflicts more than 200,000 patients throughout the world.


ACC’s progression is typically gradual  though some cases are aggressive. The disease has a tendency to grow along nerves and metastasize to the lungs.


ACC is an equal-opportunity disease that might strike anyone. It is not inherited and is not associated with smoking, drinking, infection or ethnicity. Women comprise about 60% of ACC cases.


Together with a growing network of researchers, ACCRF is accelerating research efforts needed to find effective therapies for ACC patients.

our history

The Adenoid Cystic Carcinoma Research Foundation (ACCRF) was started in 2005 with the goal of getting better therapies to ACC patients as fast as possible. Over the past 15 years, a motivated community of patients and researchers has fueled advances in scientific understanding and a strong pipeline of ACC clinical trials. ACCRF has been instrumental in bringing about all the major ACC research milestones.

2005: ACCRF Founded by Patients For Patients and with World-class Oncologists
2009: Hallmark genetic alteration of ACC tumors discovered (MYB-NFIB fusion)
2011: First preclinical ACC models for experimentation and drug screening
2017: Genetic driver of aggressive ACC discovered (NOTCH gene)
2020: Ten clinical trials open for ACC, the most ever
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