Speeches & Testimony

• National Organization for Rare Disorders Remarks Submitted before the FDA Peripheral and Central Nervous System Drugs Advisory Committee
  Presented by Diane E. Dorman, May 6, 2010
• Testimony regarding plasma-derived C1 esterase inhibition for hereditary angioedema, before the Food and Drug Administration's (FDA) Blood Products Advisory Committee
  Presented by Diane E. Dorman, May 2, 2008
• Testimony regarding the significance of the The Orphan Drug Act for the development of infectious diseases therapies in the 21st century, before the Food and Drug Administration's (FDA)Infectious Diseases Planning Committee
  Presented by Diane E. Dorman, April 28, 2008
• Testimony regarding possible compassionate allowances for people with rare diseases who apply for Social Security disability
  Presented by Diane E. Dorman, December 4, 2007
• Testimony regarding "Ensuring Safe Medicines and Medical Devices for Children"
  Presented by Robert Campbell, Jr., MD, NORD Medical Advisory Committee, March 27, 2007
• Testimony regarding "Drug User Fees: Enhancing Patient Access and Drug Safety" before the U.S. Senate Health, Education, Labor and Pensions Committee
  Presented by Diane E. Dorman, March 14, 2007
• Statement before Medicare Advisory Coverage Committee
  Presented by Diane E. Dorman, March 30, 2006
• Presentation at PDUFA Stakeholders' meeting at National Institutes of Health
  Presented by Diane E. Dorman, November 15, 2006
• Wiley Lecture for 2005 presented to FDA Alumni Association
  Presented by Abbey S. Meyers, April 6, 2005
• Testimony regarding the Food and Drug Administration's (FDA) approval process, drug safety and the concerns of patients before the U.S. Senate Health, Education, Labor, and Pensions Committee
  Presented by Abbey S. Meyers, March 1, 2005
• Responses to follow-up questions posed by the HELP Committee chairman
• Testimony regarding funding of the Office of Rare Diseases at the NIH presented to the House Appropriations Labor, Health and Human Services Education and Related Agencies Subcommittee
  Presented by Diane E. Dorman, May 14, 2003
• Speech at Workshop on Ultra-Orphan Genetic Disease Therapeutics
  Presented by Abbey S. Meyers, May 8, 2003
• NORD's Testimony to the U.S. House of Representatives regarding FY2004 appropriations for the FDA's Orphan Product Research Grants program.
  The same testimony was submitted to the U.S. Senate Agriculture Appropriations Committee. April 2003
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• Introductory Remarks, NORD Generic Biologics Conference
  Presented by Abbey S. Meyers, March 19, 2003
• FDA Testimony, Fabry's Disease
  Presented by Abbey S. Meyers, January 13 & 14, 2003
• A Tribute to Roscoe Brady, MD
  Speech delivered at NIH Symposium by Abbey Meyers, October 2002
• Italian Rare Disease Federation
  Speech delivered in Venice by Abbey Meyers, Sept. 2002
• Human Research Subject Protection
  Written comments prepared for the Senate HELP Committee. May 2002. Abbey S. Meyers
• In support of a funding increase for FDA Orphan Products Research Grant Program in FY 2003
  Testimony submitted for the record, March 2002, Diane E. Dorman, NORD Vice President for Public Policy
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• Public Meeting on the Reauthorization of the Prescription Drug User Fee Act
  Testimony submitted before the House Energy and Commerce Subcommittee on Health, December 7, 2001, Diane E. Dorman
• Unfulfilled Promises and Stem Cell Research
  Presented to MIT, November 20, 2001, Abbey S. Meyers
• Evaluating the Effectiveness of the Food and Drug Administration Modernization Act
  Testimony submitted before the House Energy and Commerce Subcommittee on Health, May 3, 2001, Abbey S. Meyers
• FY 2002 Appropriations for the Orphan Products Research Grant Program at the Food and Drug Adminstration (FDA)
  Testimony submitted to the Senate Appropriations Subcommittee on Agriculture, Rural Development and Related Agencies, April 2001, Abbey S. Meyers
• Testimony Before the House Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee
  March 14, 2001, Diane E. Dorman
• Access to Dietary Supplements for Valid Medical Uses in Children
  February 2001, Abbey S. Meyers
• Analysis by and Recommendations of the Special Emphasis Panel of the NIH on the Coordination of Rare Diseases Research
  Summary — January 2001, Abbey S. Meyers
• Orphan Drug Development Conference: "Understanding the History of the Orphan Drug Act"
  September 2000, Abbey S. Meyers
• Prescription Drug User Fee Act (PDUFA)
  September 15, 2000
• Subcommittee on Health and Environment
  September 15, 2000
• The Patient Advocate Perspective. Preparing for FDA Advisory Committee Presentations. Views from Four Perspectives
  Abbey S. Meyers, President NORD. June 30, 2000
• HHS Enhances Patient Protections: NIH and FDA to Cooperate
  HHS Press Release of May 23,2000
• New Initiatives to Protect Patients in Gene Therapy Trials
  Abbey S. Meyers, President NORD
• Collaboration Between the Pharmaceutical Industry and Patient Organization: A Delicate Balance
  Abbey S. Meyers, President NORD. February 17, 2000. Spain: International Conference of Rare Diseases and Orphan Drugs.
• History of the American Orphan Drug Act
  Abbey S. Meyers, President NORD. February 18, 2000. Spain: International Conference of Rare Diseases and Orphan Drugs
• Exploring the Role of Patient Organization in the Development of Orphan Products
  Abbey S. Meyers, President NORD. September 17, 1999