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Day One-October 16, 2017

7:00

Conference Registration and Continental Breakfast

8:00

NORD’s Welcome & Summit Preview

8:15

Community Keynote Address

9:00

FDA Keynote Address

9:30

Ethical Guidelines for Patient Organizations & Industry to Collaborate
How can patient organizations and pharmaceutical companies work together toward shared goals without compromising ethical standards?

10:15

Networking and Refreshment Break
Sponsor booths open and poster presenters available at their posters

11:00

Assuring Patient Access: Future Outlook for Patient Assistance Programs
As Patient Assistance Programs come under fire, what can be done to assure patient access to lifesaving treatments for rare diseases?

 

12:15

Lunch and Learn Breakout Roundtables
Sponsor booths open and poster presenters available at their posters

1:30

Choose Between Three Breakout Sessions
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2:45

Networking and Refreshment Break
Sponsor booths open and poster presenters available at their posters

3:30

The Challenge of Healthcare Costs and Treatment Prices
A look at the impact and current environment of pharmacy benefit managers, specialty pharmacies and other aspects of the R&D and drug delivery systems that contribute to cost.

 

4:30

Right to Try, Current Policy News & NORD’s Policy Priorities

 

5:45

Close of Day One
Networking Cocktail Reception to follow. Sponsor booths open and poster presenters available at their posters.

Day One Breakout Sessions

A

Promoting Earlier Diagnosis

B

Next Generation Treatments & Advancing Clinical Trials

C

Successful Strategies for Patient Organizations

Day Two-October 17, 2017

7:45

Continental Breakfast Opens

8:00

Sustaining Orphan Drug Development and Availability

9:00

Choose Between Three Tracks
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10:00

Networking & Refreshment Break
Sponsor booths open and poster presenters available at their posters.

10:30

Current Topics from the FDA
A look into the FDA leadership perspective on Orphan Drug Review, approvals, and the patient voice and engagement with the FDA.

 

12:30

Lunch and Learn Breakout Roundtables
Sponsor booths open and poster presenters available at their posters.

 

2:00

Investor Perspective: The Outlook for Investment in Orphan Products

 

3:00

Rare Disease Drug, Biologic and Device Development: Achievements and Opportunities

4:00

Closing Remarks

6:00

Music, Medicine and Moving Forward
A cocktail reception hosted by Children’s National Rare Disease Institute to celebrate the NORD Rare Summit

Day Two Tracks

I

The Power of Data-Sharing

II

Advancing Global Connection

III

Fundraising for Patient Organizations

Key Contacts

General Inquiries
events@rarediseases.org

Sponsorship Inquiries
Derek Gavin
dgavin@rarediseases.org