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
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
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
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, M, 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