ACCRF Winter Update - February 2024

Honoring Dr. Stenman's Groundbreaking Contributions

For nearly two decades, Dr. Göran Stenman, DMD, PhD of the Sahlgrenska Academy at the University of Gothenburg (Sweden) has been instrumental in advancing ACC research and building an international research network focused on the disease.

His pioneering work on the MYB gene was a watershed in ACC research. In 2009, Dr. Stenman became the first researcher to identify the key genomic event in ACC (a recurrent chromosomal translocation resulting in activation of the potent MYB oncogene). Later, in 2017, he demonstrated that silencing MYB slows the growth of ACC cells.

Dr. Stenman’s efforts continue to bring increased visibility to ACC research and shape some of the most promising treatment efforts in the field today.

On behalf of the ACC research and patient communities, we extend our sincerest gratitude to Dr. Stenman for his remarkable contributions.

You can learn more about his work here.

Newly Updated ACC Physcians List

We are pleased to announce the launch of our fully updated ACC Physicians List containing current information for over 850 physicians globally with experience in treating ACC.

The fully searchable database allows patients to locate physicians by name, location, institution, or field of expertise to help inform their decisions in selecting doctors. New features include a link to each doctor’s institutional website, where available, and a link to the National Physicians Index (NPI) listing for each doctor based in the USA which provides current information on practice locations and status.

This list is constantly evolving, and we rely on patient input to ensure that our database is as comprehensive and current as possible.

Please email us at if any of the following apply:

  • You feel your doctor is knowledgeable about ACC and should be added to the list
  • Your doctor on the list has retired
  • Your doctor on the list has moved away from where s/he is listed


Your guidance will ease the path for future ACC patients. We are particularly interested in countries and regions with relatively few available physicians listed.

Research Updates

Clinical Trial 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. ACCRF’s Open Studies webpage lists clinical trials that may be appropriate for ACC patients after consulting with their physicians.

Studies that recently opened, restarted, or expanded recruitment:

  • REM-422 A clinical trial of a MYB inhibitor drug (REM-422) for recurrent/metastatic ACC patients is now open in Boston at Dana-Farber. More sites across the USA will open over the coming month. ACCRF is pleased to have helped Remix Therapeutics advance this study to the clinic.

  • OBT-076 A clinical trial of OBT-076, an antibody drug conjugate that targets CD205, is now open in Bordeaux, France for ACC patients with progressing recurrent/metastatic disease.

Studies that have recently been closed or paused:

  • KB-0742: a study of this CDK9 inhibitor recently completed and enrollment and closed.

  • Amivantamab: a study of this EGFR inhibitor recently paused enrollment during an interim data analysis.

Studies with results that have recently been published:

Recently published articles

These and other important research papers are all listed on our Published Articles webpage.

ACCRF Patient Meeting 2024

Please join us Saturday, March 2 at 11am ET in Needham, MA, USA for the 2024 ACCRF Patient Meeting. This unique, in-person event provides a forum for ACC patients to meet, discuss their journeys, and hear about the latest in ACC research and treatment options.

We will be joined by this year's Patient Meeting keynote presenter, Dr. Wayne L. Hofstetter, MD of MD Anderson Cancer Center. Dr. Hofstetter will be presenting on Surgical Options for ACC Lung Metastases.

PLEASE NOTE: There is NO virtual participation option for this in-person event.


For those unable to attend in person, a recording of this presentation will be available as a webinar following the meeting.

You can register and learn more about the Patient Meeting here.

We hope to see you there!


A special thank you to everyone who donated and helped us reach our matching gift goal for the end of 2023! We couldn't have done it without so many dedicated supporters whose generosity ensure that ACC research will remain strong and groundbreaking in 2024!

Thank you all!

Learn more about how you can continue to support ACC Research.


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