Models for Accelerating Academic Rare Disease Research and Innovation: A Working Session Hosted by Notre Dame
Models for Accelerating Academic Rare Disease Research and Innovation: A Working Session Hosted by Notre Dame
An interactive working session hosted by Notre Dame to explore how universities can accelerate rare disease research and discovery through innovation, entrepreneurship and cross-sector partnerships. Co-chaired by John Crowley, Chairman and CEO of Amicus Therapeutics, and Marshall Summar, MD, Chairman of the Board of the National Organization for Rare Disorders (NORD).
October 11, 2018 | 1:30 to 8 PM
October 12, 2018 | 7:45 AM to 1 PM
Agenda: Thursday, October 11
(the Thursday events are by invitation only)
TIME TBD | Welcome Reception and Dinner
TIME TBD | Welcoming Remarks | Mary Galvin, Dean of the College of Science, University of Notre Dame
TIME TBD | Evening Keynotes (titles and speakers subject to change)
Making Big Bets: Combining Entrepreneurial Spirit with Philanthropy to Accelerate Breakthrough Discoveries into Medicines | TBA
Next Generation of Patient Advocates: Creating Opportunities for Students to Make a Difference for Rare Diseases | Megan Crowley, Notre Dame Class of 2019, patient advocate, President of RareND student organization; and Emily Eagle, Notre Dame student
Agenda: Friday, October 12
(these events are free and open to the public, but please RSVP)
7:45–8:30 AM | Continental breakfast
8:30–8:40 AM | Co-Chairs Welcome: John Crowley and Marshall Summar
8:40–9:00 AM | Opening Remarks: TBA
Overcoming Barriers to Rare Disease Drug Development
9:00–9:20 AM | Opening Keynote (titles and speakers subject to change): TBA
The Promise of Innovative Gene Therapies for Rare Disease: Universities at the Hub of Ground-breaking Technologies | TBA
9:45–10:45 AM | Stakeholder Panel
Moderators:
John Crowley and Marshall Summar
Panelists:
TBA
10:45–11:00 AM | BREAK
New Models in Patient Advocacy: Rare Disease Community Partners in Drug Development
11:00 AM– 12:00 PM | Stakeholder Panel
Moderators:
Sean Kassen, PhD, Director of Ara Parseghian Medical Research Fund, Notre Dame
Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics
Panelists:
TBA
12:00-12:15 PM | Closing Remarks and Networking Lunch: Bryan Ritchie, Vice President and Associate Provost of Innovation
1:00 PM | Program concludes
Originally published at science.nd.edu.