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.
Metastatic Non-Small Cell Lung Cancer: Knowing Your Subtype Makes All the Difference
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...
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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:
- 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
- Second Opinion Referrals to Leading Thoracic Oncologists and Other Specialists--at Community Oncology Practices and Comprehensive Cancer Centers
- 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
- Insights on Collateral Medications that Can Help Mitigate Side Effects
- Opportunities to Participate in Patient-Reported Outcomes Surveys of our Exon 20 and Rare Cancers Communities
- Review of your Comprehensive Biomarker Testing Reports and Molecular Profiling Matching Services for EGFR Exon 20 and ERBB2 /HER2 Exon 20 Patients
- Clinical Trials Matching Services
- Expanded Access (Compassionate Use) Matching Services for EGFR Exon 20 and ERBB2 /HER2 Exon 20 Patients
- Review, in the Event of Conflicting Opinions, by our Ad Hoc Molecular Tumor Boards
- Participation in the Exon 20 Group's Social Media Sites, with Closed Groups Organized for Each Exon 20 Drug
- Updates regarding the Cutting-Edge Research We've Funded at Top Laboratories Focusing on Exon 20 Issues, from Discovery to Resistance Mutations
- Participation in our Public Policy Initiatives to Accelerate Patient Access and Personalized Medicine at the State and Federal Levels
- Training via our Speaker's Bureau to Turn You into an Effective Patient or Care Partner Presenter or Citizen Lobbyist in Your Country
- 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
- Updates on All Lung Cancer and Pan-Tumor Conferences Featuring Exon 20 Presentations
- Referrals to Organizations that Work to Reduce the Financial Toxicities associated with Treatment
- 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
- 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.