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

Slides         NMF Public Service Announcement       NMF 2009 Conference Video



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.