October 12: Coalition letter urging the House to adopt the Senate Appropriations Committee’s funding levels for outreach and enrollment in marketplace coverage under the Affordable Care Act
October 12: Coalition statement regarding President Trump’s executive order released today
September 29: Coalition letter urging Congress to reject any proposal to increase Medicare Part D copayments for beneficiaries receiving the low-income subsidy (LIS)
September 25: NORD comments to the Institute for Clinical and Economic Review (ICER) on a proposed adaptation to its value framework for the assessment of treatments for ultra-rare conditions
September 22: Coalition statement regarding the Senate Finance Committee Hearing to Consider the Graham-Cassidy-Heller-Johnson Proposal
September 19: Coalition letter to the House Energy and Commerce Committee in opposition to S.204, the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017, and H.R. 878, the Right to Try Act of 2017
September 18: Coalition statement in opposition of Graham/Cassidy Bill
September 14: Sign-on letter from 140 patient organizations urging Congress to keep the Orphan Drug Tax Credit in place
September 11: NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding the “14-Day Rule”
September 11: NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding biosimilars
September 8: Coalition letter urging Secretary Price to retain the six protected classes under Medicare Part D
August 30: NORD letter voicing concerns over California Assembly Bill 265
August 21: NORD comments on the Massachusetts Executive Office of Health and Human Services’ (EOHHS) proposed Amendment to the MassHealth Section 1115 Demonstration
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)
