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A Decade of Innovation
Advances in the Treatment of Rare Diseases
In the last decade, biopharmaceutical companies have made great progress in the fight against rare diseases. Over 160 drugs were approved during the past decade to treat rare or “orphan” diseases, and according to the NIH, there are 6,000-7,000 rare diseases affecting over 25 million Americans.
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“A Decade of Innovation:
Advances in the Treatment of Rare Diseases”
Click here to download the full report.
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Press Conference – April 20, 2006
Washington, DC
Willard Hotel
Speakers:
- Billy Tauzin, President and CEO, PhRMA
- Diane Dorman, Vice President, Public Policy, National Organization for
Rare Disorders (NORD)
- Sharon Terry, President and CEO, Genetic Alliance
- Jack Johnson, Fabry disease patient, founder of Fabry Support and
Information Group
- David Hirschhorn, ALS patient
Hill Briefing – April 21, 2006
Washington, DC
Rayburn House Office Building
Speakers:
- Dr. Paul Antony, Chief Medical Officer, Pharmaceutical Research and Manufacturers of America
- Diane Dorman, Vice President, Public Policy, National Organization of Rare Disorders
- Dave Hirschhorn, Patient with Amyotrophic Lateral Sclerosis (ALS), Arlington, VA
- Dr. Terry Heiman-Patterson, Professor and Vice Chair of the Department of Neurology, Director of the Division of Neuromuscular Disorders, and Director of the MDA/ALS Center of Hope ALS Clinic, Drexel University College of Medicine
- Sharon Terry, MA, President and CEO, Genetic Alliance
- Jack Johnson, Patient and Executive Director, Fabry Support & Information Group, Concordia, MO
- Dr. Edward Kaye, Vice President, Clinical Research, Genzyme, Inc.
Briefing Details:
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