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- Info
Archived Policy Documents
Speeches & Testimony
- 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
- 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
- Speech at Workshop on Ultra-Orphan Genetic Disease Therapeutics
Presented by Abbey S. Meyers, May 8, 2003
- A Tribute to Roscoe Brady, MD
Speech delivered at NIH Symposium by Abbey Meyers, October 2002
- 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
- The Patient Advocate Perspective. Preparing for FDA Advisory Committee Presentations. Views from Four Perspectives
Abbey S. Meyers, President NORD. June 30, 2000
- 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
- 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
- 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
- Introductory Remarks, NORD Generic Biologics Conference
Presented by Abbey S. Meyers, March 19, 2003
- New Initiatives to Protect Patients in Gene Therapy Trials
Abbey S. Meyers, President NORD
Policy/Position Papers
- Letter to Commissioner of Social Security regarding initiative to improve rules for Compassionate Allowances
September 2007
- "Priority Orphans" Chart
- Letter to NIH Director Regarding Public Access to Research Information
By Abbey Meyers, NORD President, October 2004
- Position Paper: Genetic Patenting
By Abbey S. Meyers, President NORD. September 25, 2000
- Position Paper: Insurance Reimbursement for Orphan Drugs
By Abbey S. Meyers, President, NORD. August 6, 2000
- Position Paper: Genetic Discrimination
By Abbey S. Meyers, President NORD. August 11, 2000
- Position Paper: Patients' Bill of Rights
By Abbey S. Meyers, President NORD. November 2000
- Position Paper: Patient Protection in Clinical Trials
By Abbey S. Meyers, President NORD. August 14, 2000
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