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Position Statements

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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 8Sign-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)

July 22: Coalition letter to NDAA Conference Committee members in support of TRICARE coverage of medically necessary foods

July 13: Coalition letter uring Congress to send bipartisan Zika emergency spending bill to the President

July 12 & 13: PBSA statement before FDA Arthritis Advisory Committee meetings

June 28: Coalition letter to Congress urging for the conference committee to reconvene and produce a new Zika funding bill

June 27: REAP Coalition comments on CMS’s MACRA physician quality payment program proposed rule

June 24: PBSA thank you letter to Dr. Janet Woodcock and the FDA

June 7: Coalition letter endorsing H.R. 1859/S. 2782

May 31: PBSA Coalition comments to FDA on Biosimilar Labeling Guidance

May 24: Coalition letter to Senator Kirk on the REGROW Act

May 18: Coalition letter to the House supporting Zika Supplemental Funding

May 13: Coalition letter to the Senate supporting Zika Supplemental Funding

May 13: Coalition letter in support of Advancing Research for Neurological Diseases Act

May 9: CAT Coalition comments to CMS on CMMI Medicare Program: Part B Drug Payment Model

May 9: NORD comments to CMS on CMMI Medicare Program: Part B Drug Payment Model

May 1: Coalition letter to FDA on Biosimilar distinguishable naming

April 28: NORD releases a position statement on patient assistance programs (PAPs) related to the issue of increases in prescription drug spending and overall health care costs.

April 28: Letter to The Honorable Jay Nixon, Governor of Missouri, to support SB 875, a bill that will protect patients by including language calling for prescriber communication.

April 27: Coalition letter to the Senate HELP Committee in support of the Innovations initiative

April 19: PBSA Coalition letter to Commissioner Califf on FDA’s implementation of the Biologics Price Competition and Innovation Act (BPCIA)

April 5: Coalition letters to Congress in support of Zika funding

March 25: MAPRx Coalition letter to MedPAC in opposition of proposals related to Medicare Part D

March 17: Letter to House Appropriators in support of funding for the Pediatric Device Consortia Grant Program

March 14: Letter to House Armed Services Committee on TRICARE coverage of medical foods

March 14: NORD comments to FDA on Clinical Outcome Assessment (COA) Compendium

February 29: NORD letter to Congress on supporting Rare Disease Day 2016

February 19: Coalition letter to the Senate in support of Dr. Califf’s Nomination for FDA Commissioner

February 9: NORD statement at the FDA Arthritis Advisory Committee hearing on Celltrion’s biosimilar for Remicade

January 15: Coalition comments from I Am Essential to Secretary Burwell on the Draft 2017 Letter to Issuers in the Federally-facilitated Marketplaces

January 6: NORD comments to OHRP on Federal Policy for the Protection of Human Subjects

January 6: Coalition comments to OHRP on the implications of the proposed changes of the Common Rule for universal newborn screening programs

December 21: A-PLUS Coalition comments to CMS on its benefit and payment parameters 2017 proposed rule

December 21: NORD comments to CMS on its benefit and payment parameters 2017 proposed rule

December 21: Coalition comments from I Am Essential to CMS on its benefit and payment parameters 2017 proposed rule

December 21: CAT Coalition comments to CMS on its benefit and payment parameters 2017 proposed rule

December 9: NORD letter to Chairman Hatch of the Senate Committee on Finance on CMS biosimilar reimbursement

November 13: NORD letter to Congressional Appropriators in support of FDA appropriations for 2016

November 12: Coalition letter to the Senate HELP Committee in support of the Advancing Targeted Therapies for Rare Diseases Act (S.2030)

November 9: Coalition letter from I Am Essential to Secretary Burwell on discrimination in health insurance plan structure

November 9: REAP Coalition letter to Secretary Burwell on non-discrimination in health plans and activities

October 29: Coalition letter to the Senate HELP Committee in support of Dr. Califf’s Nomination for FDA Commissioner

October 27: NORD comments to the FDA on Biosimilar naming

October 23: Patients for Biologics Safety & Access coalition comments to the FDA on Biosimilar naming

October 16: Comments to the FDA on their draft guidance titled “Rare Diseases – Common Issues in Drug Development”

October 12: Letter to Chairman Paul Ryan of the House Ways and Means Committee in support of the Preserving Access to Orphan Drugs Act

September 21: Letter to the Senate Health, Education, Labor, and Pensions (HELP) Committee in support of Humanitarian Device Exemption (HDE) reforms in the 21st Century Cures Act.

September 21: APLUS Coalition letter to Secretary Burwell and letter to House Committee Chairmen expressing support for recent changes to out-of-pocket maximum rules

September 17: Coalition letter to the Senate HELP Committee in support of the OPEN Act

September 8: Comments to CMS regarding reimbursement codes for Biosimilars

September 2: Letter to the Precision Medicine Working Group recommending the inclusion of children in the Precision Medicine Initiative (PMI) cohort

August 14: Comments to the NIH regarding the NIH Strategic Plan Framework

August 10: Comments to the FDA regarding the Duchenne Muscular Dystrophy and Related Dystrophinopathies Developing Drugs for Treatment Draft Guidance

July 31: Letter to the Centers for Medicare and Medicaid Services (CMS) on Orphan Exclusion from the Medicaid Line Extension Rebate

July 31: Citizen Petition to the FDA on the use of modern testing methods for pre-clinical research

July 28: Amicus Curiae Brief filed in support of Spectrum Pharmaceuticals in Spectrum v. Burwell

July 27: Comments on the Medicaid Managed Care Proposed Rule as part of the Regulatory Education and Action for Patients (REAP) Coalition

July 15: Testimony and Presentation at the FDA Prescription Drug User Fee Program Reauthorization Stakeholder Meeting

July 13: Testimony and Presentation at the FDA Medical Device User Fee Program Reauthorization Stakeholder Meeting

June 24: Letter to U.S. Senate Committee on Finance regarding incentives for rare disease therapies as related to trade negotiations in Trans-Pacific Partnership (TPP) and President Trade Promotion Authority (TPA)

June 24: Letter to House Energy & Commerce Committee from NORD and Member Organizations supporting 21st Century Cures Act

June 23: Letter to U.S. House of Representatives supporting Children’s Access to Specialty Care Act of 2015 (H.R. 1859)

June 22: Letter to Senate Finance Committee as part of Medicare Access for Patients (MAP) Rx Coalition

June 17: White Paper (co-authored by NORD and BIO) , “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” and accompanying patient stories

May 21: Videos from Caucus Briefing on the 21st Century Cures Initiative and the Priorities of the Rare Disease Community

May 29: Final Comments to House Energy & Commerce Committee on 21st Century Cures Act

April 13:  Comments to FDA regarding Draft Guidance to help simplify “Individual Patient Expanded Access Applications: Form FDA 3926: Draft Guidance for Industry” for patients and physicians

April 13: Letters to House and Senate to reauthorize the Rare  Pediatric Disease Priority Review Voucher (PRV) Program

April 13: Letter to FDA regarding draft guidance for the Patient Expanded Access Form (Form 3926)

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