Friday, October 12, 2018 | Carey Auditorium at Hesburgh Library
These events are free and open to the public, but please RSVP
8:00–9:00 AM | Continental breakfast
9:00–9:15 AM | Co-Chairs Welcome: John Crowley and Marshall Summar, MD
9:15–9:45 AM | Keynote: The Promise of Innovative Gene Therapies for Rare Disease–Universities at the Hub of Ground-breaking Technologies | James Wilson, MD, PhD, Director, Gene Therapy Program; Rose H. Weiss Professor and Director, Orphan Disease Center, University of Pennsylvania
9:45–11:00 AM | Stakeholder Panel: Overcoming Barriers to Rare Disease Drug Development (titles and speakers subject to change): TBA
Moderators | John Crowley and Marshall Summar, MD
Panelists | Dr. Jonathan Stamler, CEO of the Harrington Drug Discovery Institute
Steve Aselage, CEO, Retrophin
Nina DiPrimio, PhD, Director of R&D, Perlara
Ellen Wagner, Parent Project Muscular Dystrophy’s Board of Directors
Kasturi Haldar, PhD, Director, Boler-Parseghian Center for Rare and Neglected Diseases, University of Notre Dame
Brian Blagg, PhD, Director, Warren Family Center for Drug Discovery & Development, University of Notre Dame
11:00–11:30 AM | BREAK
11:30 AM–12:40 PM | Stakeholder Panel | New Models in Patient Advocacy: Rare Disease Community Partners in Drug Development
Moderators | Sean Kassen, PhD, Director of Ara Parseghian Medical Research Fund, Notre Dame and Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics
Panelists | Nicole Boice, Founder, Global Genes
Cindy Parseghian, Ara Parseghian Medical Research Fund
Jean Campbell, Principal, JF Campbell Consultants and co-founder, Professional Patient Advocates in Life Sciences (PPALS)
Jennifer Bernstein, JD, Executive VP, Horizon Government Affairs
1:00–2:00 PM | Closing Lunch | Jordan Hall of Science Reading Room (southeast corner of first floor)
OTHER CAMPUS ACTIVITIES
The Rare Disease Symposium will conclude after lunch on Friday. However, attendees are welcome to participate in the following Ara Parseghian Medical Research Fund (APMRF) activities.
Friday, October 12 | Parseghian Cup Rugby Match (Open to the Public) | Stinson Rugby Stadium
5:00–6:30 PM | For the past six years, the University of Notre Dame Men’s Rugby team has played the University of Arizona in an annual match called the Parseghian Cup. The universities take turns hosting the event and this year, the Parseghian Cup will be played at Notre Dame The Parseghian Cup is open to the entire campus, and we hope to have an enthusiastic crowd watch the Irish and Wildcats go head-to-head.
Saturday, October 13
2:30 PM | Notre Dame vs Pittsburgh Football Game | Tickets may be available at ticketexchange.und.com
Accommodations (attendees must make their own reservations)
Please note: hotels fill quickly and rates vary widely during football season. The list of hotels provided below does not guarantee that rooms are available and no room blocks have been reserved at any hotel for this event. Please call each hotel for availability and rates.
Doubletree 574-234-2000
Hampton Inn & Suites (South Bend) 574-277-9373
Courtyard by Marriott 574-237-7777
Aloft 574-288-8000
Hampton Inn & Suites (Granger) 574-243-4600
Embassy Suites 574-400-2600
Fairfield Inn 574-234-5510
Hilton Garden Inn 574-232-7700