2014 RARE Patient Advocacy Summit Agenda

Thursday September 11, 2014
Day 1:

12:30 pm – Registration Opens

1:00 pm – Opening Remarks – Wendy White, CEO Siren Interactive

1:15 pm – Expectations of Summit – Nicole Boice, President Global Genes

1:30 pm – Session 1 – Caregivers: Strategies to Stay Afloat
Presented by Caregiver Action Network and Partners on the Path

2:15 pm – Session 1 Deep Dives

3:00 pm – Break – sponsored by Pfizer

3:10 pm – Innovations in Science Presentation Brief #1 – RARE Science – CEO, Christina Waters, PhD

3:30 pm – Session 2 –The E-Patient Revolution
Presented by Health 2.0 and Smart Patients

4:15 pm – Session 2 Deep Dives

5:00 pm – Shaping Regulatory Policies that Put Patients First
Presented by Pat Furlong, founding president and chief executive office, Parent Project Muscular Dystrophy and Mark Krueger, MPH, President, Mark Krueger & Associates, Inc.

6:00 pm – End of Day One.


Friday September 12, 2014
Day 2:

7:30 am – Breakfast sponsored by Walgreens

8:00 am – Opening Remarks; Walgreens + recap Day 1

8:15 am – Session 3: Patient-Centered Benefit-Risk Assessment — Why It Matters to You.
Presented by Fastercures

9:00 am – Session 3 Deep Dives

10:00 am – Break – sponsored by Shire

10:10 am – Innovations in Science Presentation Brief #2 – Project Violet – Founder, Jim Olson, MD

10:30 am – Session 4 Working Session: The Unstoppable Charity
Presented by Keegan Johnson, CEO Zenzaga

11:15 am – Session 4 – Deep Dives

12:00 pm – Networking Lunch – sponsored by Alexion

1:00 pm – Session 6 – Transition and Transformation – Rare Disease in Adolescence and Adult- hood
Presented by Dr. Maya Doyle

1:45 pm – Session 5 – Preparing for Success – Lobbying at the State and Federal level
Presented by Jen Bernstein – Horizon DC, Julia Jenkins – Rare Disease Legislative Advocates and James Romano – Patient Services Inc.

2:30 pm – Break – sponsored by Shire

2:40 pm – Innovations in Science Presentation Brief #3 – Immusoft – CEO, Matthew Scholz PhD

3:00 pm  – Session 5 – Deep Dive – Putting into practice – 21st Century Cures
Presented by: Jen Bernstein, Horizon Government Affairs

3:30 pm – Session 7 – The must have collaborations for successful drug development
Discussion Leaders – Barbara Wuebbels, Audentes and Wendy White, CEO Siren

5:00 pm – End of Day Two.

5:00 pm – Margaritaville Networking Reception – Lighthouse Courtyard
Sponsored by Mauli Ola Foundation

For more information:
 Deatiled agenda
 graphic button

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