Exon 20 Group, EGFR/HER2 Exon 20 Mutation Group

A special initiative of ICAN, International Cancer Advocacy Network

Improving Survival and Quality of Life, One Patient at a Time

The Exon 20 Group is a laser-focused, multi-stakeholder, global coalition of patients, care partners, family members, thoracic/medical oncologists, scientists, molecular profiling labs, and pharmaceutical companies and biotechs with the mission of converting exon 20 insertion mutations into chronic diseases and then curing them. Join us!

Membership in the Exon 20 Group is FREE, but we do "onboarding" of each patient first before you can join our community. Please complete our
New Patient Form
Alternatively, you may call to schedule an onboarding appointment so that you can access our numerous free services, 602-618-0183. Introductory emails describing your particular situation are welcome before we schedule our phone call with you. Send to exon20@exon20group.org

Essential Patient Services

  • Molecular Profiling Matching Services
  • Molecular Tumor Boards (when oncologists disagree)
  • Join our Mutational Registry
  • Participate in our Tissue Triaging Service
  • Join our NGS Ambassadors to Emphasize Molecular Profiling
  • Know the Co-Alterations found with Your Insertion Mutation
Full Receptor    Kinase

Exon 20 Group Research Initiatives

  • Invitation to our On-Demand Summit/Video Project for Patients, Scientists, and Clinicians
  • Updates on our Exon 20 International Research Consortium
  • Updates on Exon 20 Group-Funded Research
  • Updates on our Knowledge Bank Project led by top thoracic oncologists
  • Real World Evidence Studies and Survey Research (you are compensated for your time)
  • Participate in our Clinical Trials Project
  • Access to our Inspire logo Exon 20 Warriors Support group for patients with EGFR Exon 20 insertions/HER2 Exon 20 insertions in lung cancer and other solid tumors . (Direct link to the Exon 20 Warriors group page)
  • Access to our 19 Social Media Sites (closed group to protect your privacy)
  • Access to our Virtual Patient and Care Partner Meet Ups (closed group to protect your privacy)
  • Patient and Care Partner Meet-Ups at Conferences and Academic Medical Centers
  • Patient and Clinician Webinars on New Drugs
  • Research and Literature Updates and Daily Alerts/Postings
  • Cancer Conference Updates 

Paying It Forward: Helping Our Exon 20 Community

  • Become an Angel Buddy for a New Patient or Care Partner
  • Participate in our Public Policy Advocacy Initiatives and Briefings
  • Train to be an Effective Citizen Lobbyist or Media Interviewee
  • Participate in our Speakers' Bureau
  • Assist our International Health Equity Efforts
  • Volunteer for Clerical and Excel Projects
  • Join our Research Teams

Keep the Exon 20 Group Going


All you need to do to join the Exon 20 Group is:
  1. Please fill out the Exon 20 Group Intake Form and submit it to us. 
  2. New Patient Form

  3. After reviewing your Exon 20 Group Intake Form, we will then schedule an intake phone interview with you, or with you and your family, to discuss your case and confirm your specific exon 20 insertion mutation (making sure you that you have had NGS or Next-Generation Sequencing to identify the insertion mutation).
  4. Alternatively, you may email exon20@exon20group.org and tell us that you are interested, and we'll schedule an Intake phone call with you or with you and your family since the exon 20 journey is very much a family affair.

Since ICAN and the Exon 20 Group strictly adhere to all HIPAA (Health Insurance Portability and Accountability Act of 1996) provisions to protect your privacy, during our initial intake call/meeting with you, we will review, and you will have a chance to discuss with us our Navigation Consent forms. 

We never sell your information and only release information with your explicit permission (for example, when setting up a second opinionat your request, applying for expanded access/compassionate use, or inquiring about a clinical trial). 

Exon 20 Group Leadership

Marcia K. Horn, JD

Executive Director*

*Marcia K. Horn is President and CEO of ICAN International Cancer Advocacy Network and
Executive Director of the Exon 20 Group.

The Exon 20 Group is a special initiative of

ICAN, International Cancer Advocacy Network—a 501(c)(3) charitable organization, EIN 86-0818253.