Exon 20 Group GFR/HER2 Exon 20 Mutation Group
 

The Exon 20 Group



If so, we cordially invite you to join us

Join the Exon 20 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


Watch a short video clip from Ellrose Hanlon, daughter of Exon 20 Group Co-Founder of cherished memory, Kevin Hanlon


FDA Approves New Therapy for
EGFR Exon 20 Insertion + NSCLC Patients

Takeda's EXKIVITY™ (mobocertinib) Approved by U.S. FDA as the First Oral Therapy Specifically Designed for Patients with EGFR Exon20 Insertion+ NSCLC Takeda News Release

The Exon 20 Group, founded in 2017, provides more than 20 services to EGFR exon 20 insertion patients and HER2 exon 20 insertion patients diagnosed in lung cancer or 24 other cancer types. We are working to turn these two rare diagnoses into manageable chronic diseases. This international organization represents more than 50 countries and includes the key stakeholders necessary to drive these insertion mutations toward cure.

  • EGFR Exon 20 and ERBB2 / HER2 Exon 20 Patients, Caregivers and Patient Families
  • Thoracic Oncologists and Medical Oncologists who treat EGFR exon 20 patients and ERBB2 / HER2 exon 20 patients—more than 300 thus far
  • Cancer Biologists, Medicinal Chemists, Molecular Modelers and other scientists comprising our International Research Consortium
  • Oncology Nurses/Clinical Research Coordinators 
  • Health Regulatory Experts
  • Payers and Reimbursement Experts
  • Pharmaceutical and Biotech Companies that have EGFR exon 20 drugs and/or ERBB2 / HER2 exon 20 drugs in clinical trials
  • Laboratory Medicine (including Anatomic Pathology, Next-Generation Sequencing, and Immune-Cell Studies)

Exon 20 Summer 2021 Update

Who we are, what we do, how and why we are here.

Read now!


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.

Breaking News!

A New International Research Consortium to Battle Two Rare Cancer Mutations

In April 2016, Kevin Hanlon, an entrepreneur from Syracuse, New York, was diagnosed with an EGFR exon 20 insertion-mutated lung cancer. There are two types of exon 20 insertions, the other is a HER2 insertion. Both are rare gene mutations diagnosed in two percent of non-small cell lung cancer patients. Exon 20 insertions have also been found in 24 other cancers so far. Many of the patients diagnosed with these mutations are, like Hanlon, never-smokers in excellent shape....
— Marcia K. Horn JD, ICAN President and CEO and Exon 20 Group Executive Director

Published in The Future of Health (USA Today Mediaplanet digital supplement on Lung Health). Read the article

Metastatic Non-Small Cell Lung Cancer: Knowing Your Subtype Makes All the Difference

Pie chart graphic showing the various percentages of gene mutations-alterations identified in NSCLC Metastatic Lung Cancer - see text only link for complete alt text

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)

In Honor of Martell Bland, of Blessed Memory

We mourn the passing of Martell Bland, chair of the Exon 20 Group's Speakers Bureau and leader at the Exon 20 Group. Martell was much beloved by every patient and care partner he touched, and we will never forget him or the tireless advocacy of his beloved wife Katina throughout his journey with cancer.

To honor his life, please visit the Martell and Katina Patient Education Program at ICAN.

For those who wish to submit their memories about Martell, please email BlandProgram@askican.org Donations in Martell's memory may be made at askican.org/donate.html.

Thank you for your support.

Martell and Katina embrace at the beach Martell and Katina Bland and family pose on the faimly home doorstep Martell and Katina  celebrate rapid approval for compassionate use

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:   

  1. Direct Navigation of Your Exon 20 Insertion or Mutation Case (whether EGFR Exon 20 Insertion Mutation or ERBB2 Exon 20 Insertion Mutation--also known as an HER2 Exon 20 Insertion Mutation) and Help with an Expedited Strategic Plan Going Forward at Each Decision Point So No Time is Wasted
  2. Second Opinion Referrals to Leading Thoracic Oncologists and Other Specialists--at Community Oncology Practices and Comprehensive Cancer Centers
  3. Assignment of an "Angel Buddy" for Patients and Care Partners Throughout Your Treatment on Each Drug as a member of our EGFR Exon 20 Support Group or our ERBB2/ HER2 Exon 20 Support Group
  4. Insights on Collateral Medications that Can Help Mitigate Side Effects
  5. Opportunities to Participate in Patient-Reported Outcomes Surveys of our Exon 20 and Rare Cancers Communities
  6. Review of your Comprehensive Biomarker Testing Reports and Molecular Profiling Matching Services for EGFR Exon 20 and ERBB2 /HER2 Exon 20 Patients
  7. Clinical Trials Matching Services
  8. Expanded Access (Compassionate Use) Matching Services for EGFR Exon 20 and ERBB2 /HER2 Exon 20 Patients
  9. Review, in the Event of Conflicting Opinions, by our Ad Hoc Molecular Tumor Boards
  10. Participation in the Exon 20 Group's Social Media Sites, with Closed Groups Organized for Each Exon 20 Drug
  11. Updates regarding the Cutting-Edge Research We've Funded at Top Laboratories Focusing on Exon 20 Issues, from Discovery to Resistance Mutations
  12. Participation in our Public Policy Initiatives to Accelerate Patient Access and Personalized Medicine at the State and Federal Levels
  13. Training via our Speaker's Bureau to Turn You into an Effective Patient or Care Partner Presenter or Citizen Lobbyist in Your Country
  14. Collaborations with Partner Organizations on National, Global, and Country-by Country Sequencing and Profiling Campaigns to Identify Exon 20 Insertions and Point Mutations on Diagnosis
  15. Updates on All Lung Cancer and Pan-Tumor Conferences Featuring Exon 20 Presentations
  16. Referrals to Organizations that Work to Reduce the Financial Toxicities associated with Treatment
  17. An Invitation to the EGFR Exon 20 Group's and HER2 Exon 20 Group's Annual Summit (December 2021) covering all the issues for EGFR Exon 20 Patients and ERBB2 Exon 20 Patients
  18. The Knowledge that We Will Never Give Up on You, and We Will Never Leave You Stranded

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!

Bob

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

 

Marcia K. Horn, JD
Executive Director, Exon 20 Group

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.