• Sarcoidosis Voice of the Patient Report (2025)

• Sarcoidosis Externally-Led Patient Focused Drug Development Meeting (2024)

• Wolfram Syndrome Listening Session Summary (2025)

• Bronchiolitis Obliterans Syndrome (BOS) Externally-led Patient-Focused Drug Development Meeting (2022)

• Bronchiolitis Obliterans Syndrome (BOS) Voice of the Patient Report

• Facilitated speaker training for the Recurrent Respiratory Papillomatosis Patient-Led FDA Listening Session (2022)

• ARG1D FDA Family-Led Listening Session Report (2021)

ASGCT 2026, Panel Speaker: Centering patients in regulatory strategy for cell & gene therapies

ASGCT 2026, Poster: Family experience data with delandistrogene moxeparvovec gene therapy treatment for Duchenne muscular dystrophy.

Gene Therapy Patient Engagement Summit - Speaker

World Orphan Drug Congress 2025

• Fireside chat: The value of patient experience data to advance rare disease research

• Keynote: Vision 2030: Charting a bright future for rare medicine

• Panel: Newborn screening: Innovations, challenges, and future directions

• Fireside chat: Building patient access services

• Poster: Lived Experience of Patients with Huntington’s Disease and their Caregivers participating in the PROOF-HD trial.

• The fight to save children’s lives —and reshape the FDA

• Why Are We Still Excluding Persons With Disabilities (PWDs) In Clinical Trials?

• Thoughtful Consideration of Disabilities in Clinical Trials

• Recognizing Patients' Wants And Needs Benefits Sponsors, Regulators, And, Of Course, Patients

• Why Including Patients in FDA Engagement Will Benefit Your Trial

• Patient Experience Data Collection

• Placing the patient at the centre of the drug development paradigm

• Medical Hero Spotlight: Richie Kahn & Wolfram-like Syndrome

• Medical Hero Spotlight: Jenn McNary, Three Sons, Three Rare Diseases & Clinical Trials

• Designing Clinical Trials with the Patient in Mind

• GT the Podcast: Patient Experience Data Collection

• The Endpoint Podcast: Episode 27 with Jenn McNary and Richie Kahn

• Courageous Parents Network: Jenn McNary

• Reflecting on Forced Evolution of COVID-19

• Lifestyle tips for Glaucoma Patients

• RAAP Patient Stories: Jenn McNary

• To the Edge of the Sky