The first-ever ACCRF Patient Meeting was held on April 8, 2008, at the home of ACCRF co-founders Marnie and Jeff Kaufman. This small but mighty gathering of 14 (pictured right) laid the foundation for what would become one of the central pillars of the ACC patient community and kicked off one of ACCRF’s longest-running initiatives. In thinking about the impetus for the first Patient Meeting, Marnie Kaufman said, “especially back then, it was incredibly difficult to find other people who were going through the same thing I was with ACC. It was so important to us that we were not only supporting new research but also supporting patients and creating opportunities to feel less alone in our journeys.”

Since that first meeting in 2008, ACCRF has supported over 20 Patient Meetings across the country, from local patient-led gatherings to our annual event in Needham, Massachusetts, USA. 

We are so grateful to the many patients, family members, friends, caretakers, researchers, and physicians who have made our Patient Meetings an indispensable part of ACCRF’s history and future. Those who have shared their time, their stories, and their hope give us all the courage to continue to work towards a better future and a cure.

We thank you all. You are ACCRF.

You can read the full feature on the history of our Patient Meetings here.

ACCRF's latest Patient Webinar, "Liquid Biopsies in ACC" is now available! Join ACCRF grantee Dr. Daniel Pelaez from the University of Miami for a presentation and discussion on liquid biopsies, a form of blood tests that can detect ACC tumor cells and are less invasive than traditional biopsies.

You can find the recording here along with previous webinars in our Patient Webinar Archive.

Research Updates

We are proud to support many oncologists in their ongoing work towards new treatments and a cure for ACC. The ACCRF research network continues to facilitate cutting-edge research and clinical trials that advance our understanding of the disease. Below are the latest updates in clinical trials, research publications from ACCRF grantees, and ACCRF-funded research grants.

Published Articles



Below are the latest in research publications from ACCRF grantees. You can find these and many others on our Published Articles webpage.

• Clinical Trials for Patients with Salivary Gland Cancers: A Systematic Review of Worldwide Registers and an Evaluation of Current Challenges: ACCRF grantees Drs. Glenn Hanna, Renata Ferrarotto, Robert Metcalf, and Paolo Bossi, along with ACCRF Board member Emma Kinloch, recently published a global review of clinical trials for salivary gland cancers. Their analysis identified 47 clinical trials conducted between 2020 and 2024—the highest number ever recorded across international trial registries. Notably, 31% of these trials focused exclusively on patients with adenoid cystic carcinoma (ACC), reflecting growing research interest and investment in this rare disease. 

• Sympathetic axonogenesis promotes adenoid cystic carcinoma progression: Perineural invasion is a common feature of ACC tumors, but it’s still unclear how interactions between tumors and nerves affect ACC tumor growth. ACCRF grantees Drs. Richard Wong, Richard Bakst, Luc Morris, Alan Ho, and Yotam Drier published a study showing that ACC tumors with more nerve-related activity had worse outcomes. They also found that blocking sympathetic nerves slowed tumor growth in ACC models with perineural invasion.

• Safety and efficacy of a selective inhibitor of cyclin-dependent kinase 9 (KB-0742) in patients with recurrent or metastatic adenoid cystic carcinoma: ACCRF grantee Dr. Glenn Hanna published results from a phase 1 trial testing the CDK9 inhibitor KB-0742 in patients with ACC. While no patients had tumors shrink by 30% or more, 37% of patients had stable disease for 6 months, and 29% of patients had stable disease for 1 year.

• Reversible downregulation of HLA class I in adenoid cystic carcinoma: ACCRF grantees Drs. John Iafrate, Annie Li, Lori Wirth, William Faquin, and Julia Thierauf discovered that ACC tumors might avoid being noticed by the immune system by lowering the amount of a helpful protein called B2M. Because of this finding, one ACC patient was treated with two drugs that help activate the immune system (a STING agonist and Pembrolizumab), and their tumor shrank by 70%.

• Concurrent chemoradiotherapy versus radiotherapy alone in postoperative high-risk adenoid cystic carcinoma of the head and neck: A propensity score matched analysis: ACCRF grantee Dr. Guopei Zhu found that the addition of concurrent chemotherapy to postoperative radiation did not lead to longer disease-free or overall survival.

• Lenvatinib in Relapsed/Metastatic Adenoid Cystic Carcinoma: Real-World Data From 17 Italian Centers: ACCRF grantees Drs. Laura Locati, Lisa Licitra, Ester Orlandi, and Paolo Bossi published real-world data on 46 ACC patients treated with the multi-tyrosine kinase inhibitor lenvatinib across 17 Italian sites. In line with previous phase 2 studies testing lenvatinib treatment in ACC patients, tumor shrinkage (>30%) was observed in 21.7% of patients, and 75.7% of patients experienced progression-free survival for more than 6 months. The most frequently reported severe side effects included hypertension (25.5%), stomatitis (mouth inflammation) (17.6%), and fatigue (15.7%).

• Clinical Outcomes With Notch Inhibitors in Notch-Activated Recurrent/Metastatic Adenoid Cystic Carcinoma: ACCRF grantees Drs. Renata Ferrarotto, Adel El Naggar, and Yoshitsugu Mitani described the clinical outcomes of ACC patients treated with NOTCH inhibitors (AL101 or Brontictuzumab). Patients were reported to experience longer progression-free survival with NOTCH inhibitor treatment compared to their prior treatment.

• Survival outcomes of pulmonary metastasis-directed local therapy in adenoid cystic carcinoma: ACCRF grantees Drs. Camilla Hoff and Renata Ferrarotto found that in ACC patients with only a few lung metastases, local treatment (surgery or radiation) did not significantly improve survival over a period of 6 months to 3 years compared to patients who were monitored without immediate treatment. However, the authors noted that local therapy may still benefit certain patients—particularly those without solid histology (a sign of more aggressive disease) or those with tumors causing symptoms or located near vital organs. To build on this research, ACCRF is now supporting a clinical trial to test whether targeted radiation for a small number of lung tumors can help patients live longer.

• A pilot study of PSMA-targeted F-18-DCFPyL PET imaging of patients with adenoid cystic carcinoma: Despite its name, the prostate-specific membrane antigen (PSMA) cell surface protein is present in many cancers, including ACC. To better understand the usefulness of PSMA-directed imaging and therapy in ACC, ACCRF grantees Drs. Ana Kiess and Hyu Kang discovered that most ACC tumors had some amount of PSMA, and about 37% showed moderate to high levels. They also found that a newer imaging tracer using fluorine-18 could detect the spread of the disease in all three ACC patients they tested. Because ACC tumors don’t all have the same amount of PSMA, and overall levels are lower than in prostate cancer, doctors may need to check how much PSMA is present before deciding if these treatments will be helpful for a specific patient.

• KDM6A, ARID1A and SETD2 loss-of-function mutations as prognostic biomarkers and their association with sites of metastatic progression in locally-advanced, recurrent or metastatic adenoid cystic carcinoma: ACCRF grantee Dr. Robert Metcalf analyzed data from hundreds of ACC tumors to understand if mutations in chromatin-regulating genes can affect patient outcomes. He found that, even in the absence of a NOTCH1 mutation, patients with mutations in KDM6A or SETD2 had worse survival. Additionally, mutations in KDM6A and ARID1A were linked to a higher risk of the cancer spreading to the bone, or to both the bone and liver, respectively. Because these genes are included in many tumor sequencing tests, these findings may help doctors better predict how a patient’s cancer might behave.

Event Updates

ACCRF’s efforts are supported by the generosity of our community members. From individual donors, to Facebook fundraisers and crowdfunding, we are grateful to all those who continue to help advance ACC research for patients around the world.

Below are some highlights from recent ACCRF fundraising events. If you would like your event to be featured in an upcoming newsletter, or want more information on hosting your own fundraiser, please contact us at info@accrf.org. Thank you for your support!

ACCRF’s work is only possible through the generous support of community members like you. With increased uncertainty in the research funding landscape, our efforts to discover new, better treatments for ACC are more critical than ever. Please give today and help us continue to advance groundbreaking research that directly impacts the lives of patients.

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