Third Annual Rare Disease Patient Advocacy Summit

Author: Patient Advocacy Staff

The third annual Rare Disease Patient Advocacy Summit was held on Friday, October 13, 2023 in the Downes Ballroom of Corbett Family Hall. Over 180 guests were in attendance and represented an array of patients and caregivers, leaders from the biotech industry, Notre Dame students and alumni, faculty and staff, and community members. The Summit is co-hosted every fall by the Patient Advocacy Initiative in partnership with Dyne Therapeutics and Horizon Therapeutics (recently acquired by Amgen).

2023 Career Panelists

This year's agenda featured a showcase of Patient Advocacy students, a robust mix of patient stories, insights into why patients should be involved in the research process, the importance of elevating the patient voice, and how capacity building can help propel patient organizations forward. In addition to a talented group of panelists throughout the day, the Summit featured two plenary speakers: Andra Stratton from the Chan Zuckerberg Initiative (CZI) who spoke about the inspirational work CZI leads through the Rare As One Project, and three-time Olympic gold medalist, World Cup champion, and Notre Dame alumna, Shannon Boxx, who shared her journey battling Lupus and Sjogren’s Syndrome as an elite athlete. Josh Brumm, President and CEO of Dyne Therapeutics provided opening remarks, and Vikram Karnani, who leads Amgen’s U.S. Rare Disease Business Unit provided closing remarks along with the College of Science Dean, Dr. Santiago Schnell.

Ms. Shannon Boxx (ND '99)

During breaks, attendees had the opportunity to learn from several advocacy-based student organizations at the inaugural Mini-Expo. Featured student groups included: RareND, the Biotech Club, Wishmakers, the Global Health Club, Uplifting Athletes, and Foundation for International Medical Relief of Children (FIMRC). Immediately after the Summit, a special networking session was held for students to connect with leaders from Dyne and Horizon.

A photo gallery of the event can be found here. The Patient Advocacy Initiative staff and students thank all participants, especially the patients and caregivers, as well as continued supporters from Dyne, Horizon, the College of Science, and the Boler-Parseghian Center for Rare and Neglected Disease.