NORD Policy Statements
NORD provides advocacy on behalf of the entire rare disease community. Read key testimony, letters, and position papers here.
- Comments submitted by NORD President Peter L. Saltonstall: NORD Comments Submitted to FDA on 5-Year Draft Plan Regarding Benefit/Risk, May 7, 2013
- Letter signed by NORD and several other advocacy organizations: NORD Comments Submitted to FDA on 5-Year Draft Plan Regarding Benefit/Risk, April 30, 2013
- Comments delivered by Peter L. Saltonstall at the FDA Commemoration of the 30th Anniversary of the Orphan Drug Act, January 7, 2013
- Letter from Peter L. Saltonstall to the Patient-Centered Outcomes Research Institute (PCORI), December 4, 2012
- Comments delivered by Peter L. Saltonstall regarding the launch of new public-private partnership to encourage development of innovative medical devices, December 3, 2012
- Comments submitted by NORD in response to the Food and Drug Administration’s request for comments regarding the implementation of the FDA’s patient-focused drug development initiative, October 31, 2012
- Consensus Letter Supporting Proposed Federal Rule to Expand Rights of Individuals to Access Their Test Results, October 18, 2012
- Letter from NORD and other members of the Coalition for Health Funding regarding NIH Funding in FY 2013 Labor-HHS-Education appropriations bill
- Statement to the House and Senate sponsors of the National Pediatric Research Act
Submitted to Representative Cathy McMorris Rodgers and Senator Sherrod Brown, September 18, 2012 - The Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) Sign-On Letter, June 8, 2012
- Statement by NORD VP for Public Policy Diane Dorman to FDA Peripheral and CNS Advisory Committee, May 24, 2012
- Essential Health Benefits (EHB) Sign on Letter
Submitted to Kathleen Sebelius Secretary, U.S. Department of Health and Human Services, April 11, 2012 - Letter of Support for the BPCA and PREA Reauthorization Act of 2012
Submitted to Representatives Rogers, Eshoo and Markey, April 5, 2012 - Letter of Thanks for the Patient Access to Medical Innovation Act for Humanitarian Use Device Programs
Submitted to Representatives Harkin and Enzi of the Committee on Health, Education, Labor and Pensions, April 4, 2012 - Pediatric Device Consortia Letter
Submitted to Members of the Subcommittee on Agriculture, Rural Development, and Food and Drug Administration Appropriations, March 28, 2012 - Policy Statement: Assuring the Continued Development of Life-saving Therapies to Treat Rare Diseases:Enhancing the Accelerated Approval Process; the FAST Act and TREAT Act
March 2012 - Letter to HHS commenting on the Essential Health Benefits bulletin
Submitted electronically to EssentialHealthBenefits@cms.hhs.gov, January 26, 2012 - NORD Testimony From Congressional Hearing on Prescription Drug User Fee Act Reauthorization
Presented by Diane E. Dorman of NORD to the United States House of Representatives Committee on Energy and Commerce Subcommittee on Health, February 1, 2012 - Letter regarding current conflict of interest statutory provisions related to FDA, October 2011
- Public Meeting on Prescription Drug User Fee Act Reauthorization
Presented by Diane E. Dorman of NORD to the FDA, October 24, 2011 - Public Comments regarding the FDA section 510(k) clearance process for medical devices
Submitted by NORD to the FDA, September 22, 2011 - Citizen's Petition to FDA Regarding Orphan Drug Reviews
Submitted by Peter Saltonstall of NORD to the FDA, September 1, 2011 - Comments regarding patient-centered outcomes research
Submitted by Diane Dorman of NORD to the PCORI Board of Directors, July 18, 2011 - Supporting our Nation's Most Vulnerable Patients: Letter to Congressional Leadership Regarding Reclassification of Therapies that Treat Rare Diseases
Letter Sent July 18, 2011 - Remarks Presented Before The FDA Pulmonary-Allergy Drugs Advisory Committee
Presented by Diane E. Dorman, June 23, 2011 - Supporting a Stronger FDA: Letter to Members of the House Committee on Appropriations
Letter Sent May 31, 2011 - Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures
Presented by Diane E. Dorman, July 21, 2010 - Considerations regarding FDA review and regulation of articles for the treatment of rare disease
Presented by Frank Sasinowski, June 29, 2010 - Testimony before the Senate Appropriations Committee
Presented by Diane E. Dorman, June 23, 2010
