Exon 20 Group GFR/HER2 Exon 20 Mutation Group

The Exon 20 EGFR/HER2 Mutation Group

Patients and their families are welcome to join the Exon 20 Group. Membership is free of charge. To schedule an introductory phone call, please see our New Patient Form

Covid-19 Resources

ICAN CEO, Marcia Horn, Quoted in Precision Oncology News on the COVID-19 Crisis. Read the full article here.

For more on the COVID-19 Crisis from trusted sources, please visit the special ICAN COVID-19 Resources page

More on Covid-19

If so, we cordially invite you to join us—the EGFR/HER2 Exon 20 Group—as we work toward turning these rare cancer diagnoses into manageable chronic diseases. This international group comprises multiple constituencies:

  • Patients, Caregivers and Patient Families
  • Thoracic Oncologists and Medical Oncologists--please suggest additions!
  • Researchers
  • Patient Advocacy Organizations
  • Oncology Nurses/Clinical Research Coordinators
  • National Cancer Institute Scientists
  • Pharmaceutical and Biotech Companies
  • Laboratory Medicine (including Anatomic Pathology and Molecular Profiling)

Most importantly, the Exon 20 Group is dedicated to expediting exon 20-targeted drugs into—and through—clinical trials, to benefit patients and the global oncology community. To that end, the Exon 20 Group will work to accelerate the discovery and the rapid approval of promising exon 20-targeted agents—along with immunotherapeutic agents—and rapidly cycle those agents into multiple combination clinical trials. Ultimately, the group also seeks to help establish best practices for the use of tissue and liquid biopsy in exon 20 patients.

By joining us—and there is no membership fee—you will receive one-on-one direct patient navigation of your exon 20 case where we keep you up to date on therapeutic options that you can discuss with your oncology team; assign an Exon 20 Group Buddy on request; and keep you apprised of the work of our Exon 20 Group members. With the power of all stakeholders in the Exon 20 Group, we can succeed in accelerating the development of innovative therapies for exon 20 insertion-driven cancer--whether lung cancer or other cancers that are driven by EGFR or HER2 exon 20 insertions or point mutations.

Please help us spread the word!


Robert Hanlon, Ph.D.
Co-Founder and Chairman


Marcia K. Horn, JD
Director, Exon 20 Group

Donations to the Exon 20 Group support the following:

  1. Direct Navigation of Exon 20 Insertion Cases, both EGFR Exon 20 Insertions and HER2 Exon 20 Insertions;
  2. Patient-Reported Outcomes Surveys of our Exon 20 and Rare Cancers Communities;
  3. Cutting-Edge Research at Top Laboratories Focusing on Exon 20 Resistance Mutations
  4. Public Policy Initiatives to Accelerate the Rare Lung Cancer Treatment Pipeline
  5. Health Information Technology Initiatives
  6. National, Global, and Country-by Country Sequencing and Profiling Campaigns to Identify Exon 20 Insertions and Point Mutations on Diagnosis

The EGFR/HER2 Exon 20 Group abides by the highest standards of patient privacy and is zealously HIPAA-compliant. Your contact information will not be shared with third parties. ICAN®, International Cancer Advocacy Network (https://askican.org) is a highly acclaimed, five star and Platinum-rated 501(c)(3) cancer patient advocacy organization serving patients across the U.S. and around the world. With the assistance of experts on its various professional councils, ICAN (ICAN is totally independent of any cancer center, research institute, lab, or biopharma company) is collecting information that could lead drug developers to more fully understand these rare exon 20 targeted agents and expedite clinical trials of those agents in combination with other drugs. In short, Exon 20 Group and ICAN are working to accelerate the drug pipeline in EGFR/HER2 exon 20 mutations.

Who's Who in the Exon 20 Group is currently being updated in light of the 2020 Targeted Therapies meeting in Santa Monica. We will make the information available following the meeting.