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A US foundation started by patients in 2005 that funds research on adenoid cystic carcinoma, keeps a list of open clinical trials and helps patients find specialists and donate tumour tissue.
The Adenoid Cystic Carcinoma Research Foundation was started in 2005, according to its home page, with the goal of getting better therapies to people with adenoid cystic carcinoma (ACC) as fast as possible. The same page lists the research milestones it says it helped bring about: the MYB-NFIB fusion found in ACC tumours (2009), the first preclinical ACC models for drug screening (2011), NOTCH identified as a driver of aggressive ACC (2017) and ten ACC clinical trials open at once (2020). For patients its site covers understanding ACC, finding a physician, second opinions, tumour profiling, open trials and tumour donation; for researchers it offers grants and a toolkit of cell cultures, patient-derived xenograft (PDX) models and screening, mouse models and antibodies. The IRS lists it in Needham, Massachusetts, with tax exemption from March 2006.
Shares Rare Cancer Research Foundation, Patient-derived xenografts.
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