Exon 20 Group

The Exon 20 Group is a global community for people with EGFR exon 20 or HER2 exon 20 insertion mutations, in lung cancer and other solid tumors, and their families. It's home to the EGFR Exon 20 Warriors and HER2 Warriors support groups. It's a special initiative of ICAN, the International Cancer Advocacy Network, a 501(c)(3).

What they offer

• Ongoing navigation of your case, including review of your biomarker testing reports.
• Second opinion referrals and molecular tumor board access when doctors disagree.
• Clinical trial, expanded access and compassionate use matching.
• An "Angel Buddy," a peer who helps with side effects and the day-to-day.
• Closed online support groups, virtual meet-ups and webinars on new drugs.
• Research it funds, a mutation registry, and surveys or studies that pay you for your time.

How to join and what it costs

As of October 2026, membership is free. They onboard each patient first: you fill out the New Patient Form on their website (or email or call), then have an intake call to confirm your mutation from your NGS report. They review consent forms with you on that call.

How it fits with other groups here

The Exon 20 Group is narrower than EGFR Resisters, which covers all EGFR lung cancer. Its sister ICAN group for MET is MET Crusaders. Other biomarker groups here include ALK Positive, The ROS1ders and KRAS Kickers. My find support guide covers how to choose.

Questions I would ask

• What do I need to send for my intake call?
• Can you review my NGS report and confirm my exact insertion?
• Which trials or expanded access options fit me?
• Can you pair me with an Angel Buddy?

Contacts

• Website: exon20group.org
• How to join: New Patient Form on the website
• Email: exon20@exon20group.org
• Phone: 602-618-0183