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Position Statements

December 10: NORD comments to FDA regarding gene therapies for rare diseases

December 4: NORD comments in support of Ohio Senate Bill 56, legislation pertaining to step therapy protocol reform

December 3: Coalition comments to Delaware’s Department of Insurance in support of a proposed rule that would place restrictions on short-term, limited-duration health plans.

November 15: Coalition letter to the Senate in support of the MODERN Labeling Act (S.3519)

November 9: Coalition letter to the Council of the District of Columbia in support of a bill that would place restrictions on short-term, limited-duration plans and association health plans

October 26: NORD comments to Tennessee regarding its Section 1115 waiver

October 26: NORD letter in support of adding MPS I and Pompe to Indiana’s newborn screening panel

October 26: Coalition comments to CMS regarding Michigan’s Section 1115 waiver

October 24: Coalition statement encouraging CMS to withdrawn guidance allowing states to subsidize short-term, limited-duration plans starting in 2020

October 22: Coalition letter thanking Governor Wolf of Pennsylvania for vetoing HB2138

October 20: NORD comments to Virginia regarding its Section 1115 waiver

October 17: Coalition comments to CMS regarding Alabama’s Section 1115 waiver

October 16: Coalition letter thanking Congress for increasing funding for research

October 9: Coalition letter asking Congress to reauthorize loan repayment for pediatric subspecialists

October 2: Coalition letter thanking Congress for funding the National Neurological Conditions Surveillance System

October 1: Coalition letter to Secretary Azar regarding the patient protections in H.R.2077 that ought to be incorporated when implementing step therapy in Medicare Advantage plans

October 1: Coalition statement regarding Maine’s SPA to expand Medicaid

October 1: Coalition letter asking Secretary Azar and Administrator Verma to approve Maine’s State Plan Amendment (SPA) to expand Medicaid

September 26: Coalition letter to Secretary Azar regarding the recent decision to allow step therapy in Medicare Advantage plans

September 26: Coalition comments to South Dakota regarding its Section 1115 waiver

September 25: NORD comments to FDA regarding its definition of low-prevalence in a recent draft guidance

September 21: NORD comments to FDA regarding innovation and competition in the biological products marketplace

September 19: Coalition letter to the Senate regarding its recent bill on pre-existing conditions protections

September 11: NORD comments to FDA regarding patient-focused drug development

September 5: Coalition letter asking Congress to continue supporting the medical expense deduction

September 4: Coalition statement addressing the Senate’s recent bill on pre-existing conditions protections

August 31: NORD comments on Oklahoma’s Section 1115 waiver

August 31: Coalition comments to CMS regarding New Hampshire’s Section 1115 waiver

August 30: NORD comments on Alabama’s revised Section 1115 waiver

August 22: Coalition letter asking Congress to refrain from funding agriculture association health plans (AHPs)

August 17: NORD comments on Kentucky’s Section 1115 waiver

August 17: Coalition comments to CMS regarding Mississippi’s Section 1115 waiver

August 14: NORD comments to FDA regarding its Humanitarian Device Exemption (HDE) program

August 9: Coalition comments to CMS regarding New Jersey’s Section 1332 waiver

August 3: Coalition comments to CMS regarding Maryland’s Section 1332 waiver

August 1: Coalition statement expressing serious concerns with the Administration’s decision to expand the use of “short-term, limited-duration insurance
plans.”

July 24: Coalition letter to CMS regarding the recent court ruling on Kentucky’s work requirement in Medicaid

July 18: Coalition letter to insurance commissioners across the nation expressing concerns with copay accumulators

July 17: NORD comments to the Administration on its “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”

July 16: Coalition letter requesting Michigan to release additional data regarding its recently updated Section 1115 waiver

July 11: Coalition statement urging the Administration to resume paying the risk adjustment payments for 2017

July 10: Alliance for a Stronger FDA letter to Congress regarding FDA appropriations

July 6: Coalition comments to CMS regarding Maine’s Section 1332 waiver

June 27: NORD comments to New Hampshire regarding its Section 1115 waiver

June 26: NORD comments regarding Managed Care Organizations in Texas’ Medicaid program

June 26: Coalition comments to Washington regarding its short-term limited-duration medical plan rulemaking stakeholder draft

June 25: NORD comments to CMS regarding the inpatient prospective payment system (IPPS) proposed rule

June 21: NORD comments regarding funding for newborn screening in Texas’ Legislative Appropriations Request

June 20: Coalition letter in support of copay assistance in Massachusetts

June 19: Coalition statement regarding the expansion of Association Health Plans (AHPs)

June 19: Coalition letter in opposition to legislation in Pennsylvania that would seek to implement work requirements in Medicaid

June 14: Coalition comments to CMS regarding Ohio’s Section 1115 waiver

June 14: Sign-on letter from patient organizations in support of Michigan House Bill 5983, an act to establish a Rare Disease Advisory Council.

June 8: NORD letter of support for New Jersey Assembly Bill 2431, bipartisan legislation to limit out-of-pocket prescription costs.

June 8: Coalition comments regarding Wisconsin’s Section 1332 waiver

June 1: NORD comments to the American Medical Association expressing concerns with their resolution proposing reforms to the ODA

May 23: NORD letter in support of New Hampshire House Bill 1791, an act calling for prescriber communication with regard to biosimilars

May 21: NORD comparison of two versions of the Right to Try Act

May 21: NORD letter in support of Ohio Senate Bill 56, an act pertaining to step therapy protections

May 21: Coalition letter in opposition to the Right to Try Act (S.204)

May 18: NORD comments to FDA regarding the development and submission of proposed draft guidance relating to patient experience data

May 16: NORD comments in opposition to Rhode Island Senate Bill 2532, a bill pertaining to copay accumulators

May 14: Coalition letter urging CMS to rescind invitation to states to include work requirement policies in their 1115 demonstration waiver applications

May 8: Coalition letter to Congress requesting continued support for the defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DOD)

April 23: I Am Essential coalition comments to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)

April 23: Coalition comments to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)

April 23: Coalition letter to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)

April 18: Sign-on letter from over 100 rare disease patient organizations in support of the RARE Act of 2018

April 18: NORD letter in support of Connecticut House Bill 5297, an act requiring continuing medical education in screening for rare gastrointestinal cancers

April 17: Coalition letter asking Congress to voice opposition to the proposed rule regarding short-term, limited-duration plans (STLDs)

April 12: Coalition statement expressing concerns with the 2019 Notice of Benefit and Payment Parameters final rule

April 11: Coalition letter in opposition to Michigan Senate Bill 897, a bill requiring the state to implement a work requirement in its Medicaid program

April 9: Coalition letter to Secretary Azar regarding Medicare Part D’s protected classes policy

April 4: Coalition comments regarding Colorado’s proposed permanent rule on cost-sharing

April 3: Coalition letter asking Governors to voice opposition to the proposed rule regarding short-term, limited-duration plans (STLDs)

April 2: NORD comments to the Alabama Medicaid Agency on its Section 1115 Demonstration Application

March 27: Coalition letter asking Congress to appropriate funds for the Pediatric Device Consortia (PDC) Grant Program

March 26: NORD letter in support of West Virginia House Bill 4524, an act calling for prescriber communication with regard to biosimilars

March 26: Coalition statement regarding Congress’ failure to include a market stabilization package in the spending deal

March 26: Coalition letter in opposition of Rhode Island Senate Bill 2532, an act that would prevent copay assistance from being applied to out-of-pocket expenses

March 22: Sign-on letter to the Senate from 106 patient and provider organizations in opposition to the Right to Try Act

March 19: Coalition letter regarding recent policy changes proposed by the administration

March 19: Updated NORD one-pager detailing our opposition to the Right to Try Act

March 19: Updated sign-on letter from over 100 patient and provider organizations in opposition to the Right to Try Act

March 13: Coalition statement calling on Congress to pass a market stabilization proposal

March 12: Sign-on letter from 78 patient organizations in opposition to the newest version of the Right to Try Act

March 6: Coalition comments on the Department of Labor’s proposed rule regarding Association Health Plans (AHPs)

March 6: NORD letter in support of Connecticut Senate Bill 398, an act relating to the enforcement of Connecticut’s step therapy law

March 5: Coalition comments to CMS regarding the Medicare prescription drug benefit and beneficiary access

February 27: Coalition letter to Congress regarding medical research within the fiscal year 2019 National Defense Authorization Act

February 23: Coalition letter to Congress in support of the Medical Nutrition Equity Act (S.1194/H.R.2587)

February 22: Coalition comments to CMS on Wisconsin’s Section 1115 BadgerCare demonstration waiver extension application

February 22: NORD comments to CMS on Wisconsin’s Section 1115 BadgerCare demonstration waiver extension application

February 22: Coalition comments to CMS on Mississippi’s Section 1115 revised demonstration waiver application

February 22: NORD comments to CMS on Mississippi’s Section 1115 revised demonstration waiver application

February 21: Coalition sign-on letter to Medicaid Directors on the importance of Medicaid formulary access for rare disease patients

February 20: NORD comments in support of Missouri House Bill 2407

February 20: Coalition statement in response to a proposed rule that would expand the use of “short-term limited duration” insurance plans

February 18: NORD comments to FDA regarding the designation of pediatric subpopulations

February 16: NORD comments to FDA regarding patient-focused drug development

February 16: NORD comments to the Food and Drug Administration (FDA) regarding targeted therapies

February 13: Coalition letter to Secretary Azar regarding Idaho’s recent insurance bulletin

February 13: NORD one-pager emphasizing our opposition to the Right to Try Act

February 12: NORD letter in support of Ohio Senate Bill 56, an act relating to step-therapy

February 12: NORD comments in support of Kansas Senate Bill 304, an act relating to step- therapy

February 6: NORD letter in support of Oregon House Bill 4156, an act relating to out-of-pocket costs

February 6: Coalition letter to Congress in opposition to the Right to Try Act

February 5: NORD comments to the Food and Drug Administration (FDA) regarding pediatric drug development guidance

February 5: Coalition comments to CMS on Arizona’s Section 1115 demonstration waiver request

February 5: NORD comments to CMS on Arizona’s Section 1115 demonstration waiver request

February 2: American Plasma Users (APLUS) coalition letter regarding the Patient Notification System (PNS)

January 30: Coalition letter to Congress regarding a desire for a hearing on ensuring patient safety and access in the midst of the Biologics Price Competition and Innovation Act (BPCIA)

January 30: Coalition comments to CMS on New Mexico’s Centennial Care 2.0 1115 Waiver Renewal Application

January 26: Coalition comments to CMS on Kansas’ KanCare 2.0 Section 1115 Demonstration Renewal Application

January 26: NORD comments to the Centers for Medicare and Medicaid Services (CMS) on Kansas’ KanCare 2.0 Section 1115 Demonstration Renewal Application

January 25: Coalition response to the Department of Health and Human Service’s (HHS) request for information (RFI) titled  “Promoting Healthcare Choice and Competition Across the United States”

January 18: NORD letter in support of South Dakota SB 75, an act calling for prescriber communication with regard to biosimilars

January 17: NORD comments to the Centers for Medicare and Medicaid Services (CMS) on Next Generation Sequencing (NGS)

January 17: Coalition comments to the Centers for Medicare and Medicaid Services (CMS) on Next Generation Sequencing (NGS)

January 17: NORD letter in support of adding SMA to Georgia’s newborn screening panel

January 17: NORD letter to Pennsylvania’s Rare Disease Council regarding the state’s newborn screening panel

January 16: Coalition letter to the Centers for Medicare and Medicaid Services (CMS) regarding direct and indirect remuneration (DIR)

January 16: Coalition comments to the Centers for Medicare and Medicaid Services (CMS) regarding Medicare Part D

December 20: Coalition statement in response to Congress repealing the ACA’s individual mandate within the Tax Cuts and Jobs Act

December 14: NORD comments to the Massachusetts Senate Joint Committee on Financial Services regarding fail first legislation

December 12: Coalition letter to tax reform conferees regarding the ACA’s individual mandate

December 8: Coalition letter to the conference committee in strong support of the medical expense deduction

December 7: Coalition letter urging Congress to protect funding for the Medicare State Health Insurance Assistance Program (SHIP) for FY18.

December 7: Coalition letter from over 160 patient organizations to the tax reform conference committee in strong support of the Orphan Drug Tax Credit

December 1: NORD letter of opposition regarding Arkansas Board of Pharmacy’s proposed rule

November 30: Coalition letter to the Senate in support of the Collins Amendment

November 30: Coalition statement regarding a Congressional Budget Office (CBO) score confirming that the Alexander-Murray bill is not a fix for repealing the individual mandate

November 27: Coalition comments on Health and Human Services (HHS) Notice of Benefit and Payment Parameters for 2019

November 20: Coalition statement in opposition to the House of Representatives’ vote to repeal the Orphan Drug Tax Credit

November 15: NORD letter to IL Department of Healthcare and Family Services regarding Medicaid DUR for nusinersen and other orphan drugs

November 14: Coalition statement urging Congress to not include a repeal of the individual mandate within tax reform

November 14: Coalition statement by 36 patient organizations in opposition to the Senate’s proposed weakening of the Orphan Drug Tax Credit

November 8: Coalition letter from over 200 patient organizations imploring Congress to maintain the Orphan Drug Tax Credit **Updated letter as of November 10**

October 31: Coalition letter in support of the proposed substitute for Michigan House Bill No. 4472

October 26: Coalition statement urging Congress to act on the Bipartisan Health Care Stabilization Act of 2017 in light of the Congressional Budget Office (CBO) report

October 20: NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding the MassHealth Section 1115 Demonstration Amendment Request

October 18: Coalition statement in support of the HELP bipartisan stabilization deal

October 18: Coalition letter to the Centers for Medicare & Medicaid Services (CMS) regarding the MassHealth Section 1115 Demonstration Amendment Request

October 12: Coalition letter to Congress in support of the Ensuring Children’s Access to Specialty Care Act of 2017

October 12: Coalition letter urging Congress to include support for loan repayment for pediatric subspecialists as part of the effort to reauthorize the Title VII health professions workforce programs

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 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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