Share Your Patient Story
We want to hear your story.
Your lived experience helps inform ICER’s report on the overall benefit that a new drug brings to its patients. It’s important to us that we know what matters to you—the patient—to make sure our reports can support policies and guidelines that help make sure patients can access and afford the most effective treatments.
Keep in Mind
Anything you share in this form will remain anonymous. ICER will summarize all patient input into Section 2 of our report.
This form is intended for individual patients, individuals with a lived experience, and caregivers. It should take about 10 minutes to complete.
Patient advocacy organizations should contact Cat Koola Fischer ([email protected]) to learn how they can participate in an ICER review.
ICER uses your feedback to develop sections of our report about the patient experience and aspects of the treatment or disease that may not be described in available clinical evidence.
You acknowledge that you are not required to provide information to ICER and that you are doing so voluntarily. Please see our Terms of Use and Conditions and our Privacy Policy to review how we use and disclose information submitted to us. While we do not plan to publish information that identifies a particular individual, we intend to use the information submitted as part of our drug reviews. We recognize that submissions sometimes contain specific medical information that might raise concerns about appropriateness of treatment, physical or mental health, and safety. The use of this site, and information submitted to ICER, should not take the place of professional medical care. ICER does not diagnose health problems or provide treatment advice. The completion of this form does not trigger any patient-provider relationship. Any information found on this site, or inferred from this form, should in no way be considered medical advice or a plan for health management. Anyone seeking or needing immediate medical treatment is advised to contact their health care provider or visit an emergency room.
Share Your Story
Preview the form | Patient View Caregiver View
Reach Out
Talk with us | Contact Cat Koola Fischer, ICER’s Senior Director of Patient Engagement at [email protected]
Patient Portal Links
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Impact of Share Your Story Form Submissions
2025 Non-Cystic Fibrosis Bronchiectasis (NCFB)
We received 80 Share Your Story Forms from NCFB patient advocates. With that information, ICER put together a qualitative analysis on how NCFB impacts the:
- Treatment experience
- Daily life of patients and caregivers
- Access and affordability of care
Click here to view the NCFB Final Report (See Section 2 and Supplement Section B).
2026 Narcolepsy
We received 37 Share Your Story Form submissions from the narcolepsy patient community. This information shaped ICER’s understanding of the:
- Difficult diagnostic journey
- Impact on daily life
- Impact on education & career
- Choosing to not have kids
- Significant caregiver impacts
Click here to view the Narcolepsy Evidence Report (See Section 2).
2026 Parkinson’s Disease (ongoing)
We have received 6 Share Your Story Submissions so far for ICER’s Parkinson’s Disease review. Check back to see how these responses will impact ICER’s summary of the patient and caregiver lived experience.
Click here to view current deliverables for the Parkinson’s Disease review.