August 16: NORD letter to Congress outlining short-term and long-term stabilization and improvement proposals for the Affordable Care Act (ACA)
July 18: Coalition letter urging the House to restore Medicare State Health Insurance Assistance Program (SHIP) funding to FY16 levels
July 12: Coalition comments in response to Health and Human Services (HHS)’s Request for Information (RFI) on ways to reduce regulatory burdens and improve health care choices to empower patients
July 11: Coalition letter urging Congress to negotiate a bipartisan budget deal that raises the sequestration caps
July 6: Coalition letter opposing proposed budget cuts to newborn screening programs
June 15: Coalition letter urging Senate leadership to protect Medicaid
June 12: Coalition letter urging Congress to reauthorize the Children’s Health Insurance Program (CHIP)
June 12: Coalition comments to FDA on the creation of an Office of Patient Affairs
June 9: NORD letter in support of the Medical Nutrition Equity Act of 2017
June 1: Coalition letter in support of New York S.4788/A.7509, acts regarding the substitution of interchangeable biological products
May 23: Zika Coalition letter to the House Committee on Energy and Commerce
May 17: Oregon coalition letter regarding out-of-pocket costs
May 9: NORD letter in support of the Enhancing Clinical Trial Design Act
May 8: Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements
May 2: Coalition principles for access to unapproved therapies
April 28: NORD comments on FDA Reauthorization Act of 2017 discussion draft
April 28: NORD letter in support of the Rare Disease Expert Provision in Iowa House File 653
April 24: MAPRx Coalition letter to the Centers for Medicare & Medicaid Services (CMS)
April 19: Coalition comments on manufacturer communications regarding unapproved uses of approved or cleared medical products
April 4: Coalition letter urging Congress to provide funding for newborn screening in FY 2018 appropriations
April 3: NORD comments on proposed changes to ICER’s value framework
April 3: NORD comments on ICER’s Patient Participation Guide
March 28: NORD letter in support of California Senate Bill 643, a bill to add Duchenne muscular dystrophy to the list of medical conditions eligible for the Genetically Handicapped Persons Program
March 28: NORD letter in support of Iowa House File 233, an act regarding step therapy protocols
March 27: Coalition letter urging Congress to include funding to combat Zika in Fiscal Year 2018 appropriations
March 21: NORD letter in support of Florida House Bill 963, an act regarding newborn screening
March 20: Coalition letter to Congress expressing concern over proposed changes to Medicaid
March 20: NORD letter in support of Nevada Assembly Bill 245, an act calling for prescriber communication with regard to biosimilars
March 16: NORD letter in support of Oregon Senate Bill 237, an act regarding cost sharing
March 16: NORD letter in support of Kansas House Bill 2107, an act calling for prescriber communication with regard to biosimilars
March 7: American Plasma Users Coalition (APLUS) letter to Congress regarding patient protections
March 7: Coalition for Accessible Treatments (CAT) letter to Congress regarding ACA Cost Sharing
March 6: Coalition healthcare reform principles
March 1: Coalition letter in support of CT HB 7118, an act calling for prescriber communication with regard to biosimilars
February 27: Coalition letter to President Trump regarding rare diseases and the hiring freeze
February 23: NORD Principles for Health Coverage Reform
February 22: NORD State Ambassador testimony before the Connecticut General Assembly’s Public Health Committee supporting HB 6009, an act to establish a Rare Disease Advisory Council
February 15: NORD letter in support of Alabama House Bill 82, an act calling for prescriber communication with regard to biosimilars
February 10: Coalition letter urging Congress to preserve funding for programs that provide critical support to state newborn screening programs
February 10: Coalition letter urging Congress to provide ample funding to combat the Zika virus
February 10: Coalition letter to New Jersey Legislature regarding patient out-of-pocket costs for prescription medications
February 10: NORD letter in support of New Mexico Senate Bill 180 and House Bill 260, acts calling for prescriber communication with regard to biosimilars
February 9: NORD letter on preexisting conditions insurance protections
February 7: Coalition letter to President Trump regarding vaccine safety
February 3: NORD letter in support of South Carolina Senate Bill 299 and South Carolina House Bill 3438
February 3: NORD letter in support of Nebraska Legislative Bill 481
February 3: NORD letter in support of Alaska Senate Bill 32
January 24: NORD letter in support of Kansas House Bill 2107
January 18: NORD letter in support of Montana House Bill 233
January 6: NORD comments to FDA on the Center for Devices and Radiological Health’s (CDRH) establishment of the Patient and Care-Partner Connection (P&CC)
