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
"Congratulations to Janssen Oncology and its principal investigators and study teams as well as to amivantamab patients and their families throughout the Exon 20 Group."
— Marcia K. Horn, ICAN CEO and Exon 20 Group Executive Director Full article here!
If so, we cordially invite you to join us—Exon 20 Group—the EGFR Exon 20 Support Group plus the ERBB2 / HER2 Exon 20 Support Group----as we work toward turning these rare cancer diagnoses into manageable chronic diseases. This international organization represents more than 50 countries and is comprised of the key stakeholders necessary to tame these insertion mutations.
If your oncologist cannot tell you what specific subtype of Non-Small Cell Lung Cancer (NSCLC) you have been diagnosed with, then your tissue may not have been adequately profiled via comprehensive biomarker testing. You'll want to take a look at this NSCLC pie chart created by one of the leading scientists in the exon 20 insertion field, Jacquelyne ("Jackie") Robichaux, PhD, member of the John V. Heymach, MD, PhD Laboratory and Assistant Professor at The University of Texas MD Anderson Cancer Center...Expand Chart InfoGraphic or select (PPTX) (Text Only) (JPG)
If you are like the many hundreds of EGFR Exon 20 and ERBB2 / HER 2 Exon 20 patients we have worked with since 2017, your exon 20 diagnosis has come as a total shock. We are here to help you and your family navigate EGFR Exon 20 or ERBB2 / HER2 Exon 20 insertion treatment with the hope of thriving throughout treatment and not merely surviving through treatment. We are also here to help any clinician or other stakeholder wanting to get involved in this important space.
Most importantly, the Exon 20 Group is dedicated to expediting exon 20-targeted drugs for EGFR exon 20 patients and ERBB2 / HER2 exon 20 patients into—and through—clinical trials, to improve patient outcomes. To that end, the Exon 20 Group will work to accelerate the discovery and the rapid approval of promising EGFR and ERBB2 / HER2 Exon 20-targeted agents— and rapidly cycle those agents into combination clinical trials.
By joining us—and there is no membership fee—you will receive the following benefits and services, which are funded, through charitable donations to the Exon 20 Group at ICAN, from our patients, families, special events, and sponsors:
Tremendous progress has been made over the last few years with patients living longer with better quality of life, but there is still much work to be done. With the power of all stakeholders in the Exon 20 Group, we can move closer to the day when a rare exon 20 insertion mutation diagnosis will be met with far greater hope for living fully with a chronic but manageable disease.
Please help us spread the word!
and Members of the Exon 20 Group Council
The 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 our patients, care partners, lab colleagues, and experts on its various professional councils, the Exon 20 Group at ICAN—an organization completely independent of any physician group, cancer center, research institute, biomarkers testing lab, or biopharma company—is amassing insights based on our in-depth involvement with patients and care partners which could lead drug developers to more fully understand these rare exon 20 mutations and expedite clinical trials of exon 20 agents in combination with other drugs.