2014 Rare Patient Advocacy Summit Videos

Day 1: Thursday- September 11, 2014

 

Opening Remarks & Session 1: Caregivers- Strategies to Stay Afloat
 

 

Innovations in Science Presentation Brief 1: RARE Science
 

 

Session 2: The E-Patient Revolution
 

 

Innovations in Science Presentation Brief 2: American MedChem
 

 

Session 3: Shaping Regulatory Policies That Put Patients First
 

 

Day 2: Friday- September 12, 2014

 

Opening Remarks

 

 

Session 4: Patient-Centered Benefit-Risk Assessment: Why It Matters To You

 

 

Session 4: Deep Dive- Mobilizing Your Community For Patient-Focused Drug Development

 

 

Innovations In Science Presentation 3: Project Violet

 

 

Session 5: The Unstoppable Charity

 

 

Session 5 Deep Dive: Missions, Goals and Strategic Planning

 

 

Session 6: Transition and Transformation- Rare Disease In Adolenscence and Adulthood

 

 

Session 7: Preparing For Success- Lobbying At The State and Federal Level

 

 

Innovations In Science Presentation Brief 4: Immunosoft

 

 

Session 8: Putting Into Practice- 21st Century Cures

 

 

Session 9: The Must-Have Collaborations For Successful Drug Development

Session 9 Part 1

 

 


Session 9 Part 2