{"entity":{"id":"accrf","kind":"institution","name":"Adenoid Cystic Carcinoma Research Foundation","aka":["ACCRF","Adenoid Cystic Carcinoma Researchfoundation"],"tldr":"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.","summary":"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.","asOf":"2026-11-05","links":[{"label":"ACCRF home page (history and milestones)","url":"https://accrf.org/"},{"label":"IRS record (via ProPublica Nonprofit Explorer)","url":"https://projects.propublica.org/nonprofits/organizations/206745475"}],"tags":[],"related":["rare-cancer-research-foundation","brave-like-gabe"],"cancers":["adenoid-cystic-carcinoma","salivary-gland","adenoid-cystic-carcinoma-breast"],"sections":[],"technologies":["pdx-models"],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"city":"Needham, MA","country":"US","lat":42.281,"lng":-71.233,"institutionType":"consortium","website":"https://accrf.org","programs":["Research grants, including the Kara Gelb Memorial Grant","PDX model and drug screening platform for researchers","Physician finder and second-opinion guidance","Clinical trial listings for ACC","Tumour donation for research","Patient webinars and peer support"]},"route":"/institutions/accrf/","neighbours":{"institution":[{"id":"brave-like-gabe","kind":"institution","name":"Brave Like Gabe Foundation","route":"/institutions/brave-like-gabe/"},{"id":"rare-cancer-research-foundation","kind":"institution","name":"Rare Cancer Research Foundation","route":"/institutions/rare-cancer-research-foundation/"}],"cancer":[{"id":"adenoid-cystic-carcinoma","kind":"cancer","name":"Adenoid cystic carcinoma","route":"/cancers/adenoid-cystic-carcinoma/"},{"id":"adenoid-cystic-carcinoma-breast","kind":"cancer","name":"Adenoid cystic carcinoma of the breast","route":"/cancers/adenoid-cystic-carcinoma-breast/"},{"id":"salivary-gland","kind":"cancer","name":"Salivary gland cancers","route":"/cancers/salivary-gland/"}],"technology":[{"id":"pdx-models","kind":"technology","name":"Patient-derived xenografts","route":"/technologies/pdx-models/"}]}}