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Models for Accelerating Academic Rare Disease Research and Innovation: A Working Session Hosted by Notre Dame

Location: Carey Auditorium at Hesburgh Library

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


John Crowley and Marshall Summar



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


Sean Kassen, PhD, Director of Ara Parseghian Medical Research Fund, Notre Dame

Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics



12:00-12:15 PM | Closing Remarks and Networking Lunch: Bryan Ritchie, Vice President and Associate Provost of Innovation

1:00 PM | Program concludes

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