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American People

26th Annual Voluntary Health Leadership Conference

Ponte Vedra Inn & Club
Ponte Vedra Beach, Florida
February 13-15, 2013
Each year, the National Health Council (NHC) brings together the chief executive officers and senior volunteers from member patient advocacy organizations to learn about the latest in medical research and health care policy, and to share best practices for meeting their organizational goals to serve people with chronic diseases and disabilities.
The attendees at this conference heard from the following leading authorities on issues of concern to the patient advocacy community. Below are links to their presentations and short video interviews with some of the speakers.     
Opening Keynote Address
Chris and Hugh Hempel
Parents of twins with an ultra-rare, fatal disease
Slides               Video trailer for documentary “Here. Us. Now.”          
MODDERN Cures Act: Make It a Priority for Your Fly-In
Marc Boutin
Executive Vice President & Chief Operating Officer, National Health Council
Vicki Kalabokes
President & Chief Executive Officer, National Alopecia Areata Foundation
Philip M. Gattone
President & Chief Executive Officer, Epilepsy Foundation
Leveraging Partnerships: A New Era for Biomedical Research
Story C. Landis, PhD
Director, National Institute of Neurological Disorders and Stroke, National Institutes of Health
Slides               Video Interview
Case Study: Innovative Strategies to Accelerate Research
Harry Johns
President & Chief Executive Officer, Alzheimer's Association
Working Together to Improve Health
Margaret Hamburg, MD
Commissioner of Food and Drugs, Food and Drug Administration
Video Interview            Speech text
Case Study: Panel on Registries and Clinical Trial Matching
John Walsh
President & Chief Executive Officer, Alpha-1 Foundation
Lindsay Groff
Executive Director, Barth Syndrome Foundation
Ted Gansler, MD
Director, Medical Content, American Cancer Society
Working Together with Patients to Accelerate Innovation
Elias Zerhouni, MD
President, Global Research and Development, Sanofi
Case Study: Millions in Free Health Care – Believe it!
Carolyn Levering
President & Chief Executive Officer, National Marfan Foundation
Ray Chevallier
Board Chair, National Marfan Foundation
Kathleen Mimnagh, MD
Board Member, National Marfan Foundation
The 26th Annual Voluntary Health Leadership Conference was made possible with the support of
Premier Sponsors
  • AstraZeneca Pharmaceuticals
  • Eli Lilly and Company
  • Genentech
  • Johnson & Johnson
  • Novartis Pharmaceuticals
  • Pfizer Inc
  • Purdue Pharma, L. P.
Leading Sponsors
  • AdvaMed
  • Astellas Pharma US
  • BIO
  • Bristol-Myers Squibb Company
  • Sanofi
Supporting Sponsors
  • Allergan
  • Community Health Charities
  • Drug Information Association
  • FaegreBD Consulting
  • Grifols
  • National Hospice and Palliative Care Organization
  • National Pharmaceutical Council
  • Novo Nordisk
The 2014 Voluntary Health Leadership Conference will be held at the Omni Tucson National Resort in Tucson, Arizona, from February 12 to 14.