Search Results for: reports_by_letter.html

Policy Statement

NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation letter to CDC Director, Dr. Rochelle Walensky, requesting additional guidance from CDC to ensure rare disease patients have access to the COVID-19 vaccine

Policy Statement

NORD Letter to the Arizona Senate Health and Human Serivces Committee regarding step therapy reform

Policy Statement

NORD joins a coalition letter to the Minnesota House Commerce Finance and Policy Committee in support of House File 633

Policy Statement

NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation Letter to the Advisory Committee on Immunization Practices (ACIP), Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine

Policy Statement

NORD letter to the Oregon House Committee on Health Care regarding utilization management

Policy Statement

NORD and several patient organizations submit letter of support to the California Senate Committee on Health for SB 247, a bill to establish a Rare Disease Advisory Council (RDAC) and ombudsperson

Policy Statement

NORD, Hemohilia of SC and several other patient organizations submit a letter of support to Chairman Howard on H3956, to establish a Rare Disease Advisory Council in South Carolina

Policy Statement

NORD Submits Letter of Supporting Telehealth for House Energy & Commerce Health Subcommittee Hearing: The Future of Telehealth: How COVID-19 Is Changing the Delivery of Virtual Care

Policy Statement

NORD letter to Governor Northam of Virginia requesting he sign HB 1995 and HB 2332 into law to create an RDAC and state-based reinsurance program

Policy Statement

NORD and 21 Other Organizations Send Letter to House Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening

Policy Statement

NORD and 21 Other Organizations Send Letter to Senate Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening

Policy Statement

NORD Letter to the Arizona House Health and Human Services Committee regarding step therapy reform

Policy Statement

NORD and 13 additional patient organizations submit letter expressing continued support for Medicaid expansion in Arkansas

Policy Statement

NORD, American Heart Association, and 50 other Patient Organizations Sign on to Letter to House Labor, HHS Subcommittee on Appropriations Requesting Increased Funding for CDC’s National Center for Chronic Disease Prevention and Health Promotion

Policy Statement

NORD, American Heart Association, and 50 other Patient Organizations Sign on to Letter to Senate Labor, HHS Subcommittee on Appropriations Requesting Increased Funding for CDC’s National Center for Chronic Disease Prevention and Health Promotion

Policy Statement

NORD Letter to Arkansas Representative Gray regarding recent amendments to SB 143

Policy Statement

Coalition letter to members of the Rhode Island House Committee on Health and Human Services in support of, HB 5704, step therapy reform legislation.

Policy Statement

NORD letter to the California Assembly Committee on Health regarding utilization management

Policy Statement

Coalition letter to Governor Murphy and the NJ Senate in support of, A4815/S3051, step therapy reform legislation.

Policy Statement

NORD letter of thanks to Rep. Paul Hollis, sponsor of Louisiana HB 460, a bill to create a Rare Disease Advisory Council

Policy Statement

NORD joins coalition letter urging the federal government to rescind rules that weaken the beneficiary protections in the Families First Coronavirus Response Act (FFCRA)

Policy Statement

NORD, Hemophilia of SC and 11 other patient organizations submit a letter of support to the South Carolina House Medical, Military, Public, and Municipal Affairs Committee in support of House Bill 3956 to establish an RDAC

Policy Statement

CDC Response to NORD, ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation Letter to CDC Director, Dr. Walensky, Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine

Policy Statement

NORD letter of support for the nomination of Andrea Palm to be Deputy Secretary of Health and Human Services.

Policy Statement

NORD letter of support for the nomination of Chiquita Brooks-LaSure to be Administrator of the Centers for Medicare and Medicaid Services.

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Search Results for: reports_by_letter.html

NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation letter to CDC Director, Dr. Rochelle Walensky, requesting additional guidance from CDC to ensure rare disease patients have access to the COVID-19 vaccine

NORD Letter to the Arizona Senate Health and Human Serivces Committee regarding step therapy reform

NORD joins a coalition letter to the Minnesota House Commerce Finance and Policy Committee in support of House File 633

NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation Letter to the Advisory Committee on Immunization Practices (ACIP), Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine

NORD letter to the Oregon House Committee on Health Care regarding utilization management

NORD and several patient organizations submit letter of support to the California Senate Committee on Health for SB 247, a bill to establish a Rare Disease Advisory Council (RDAC) and ombudsperson

NORD, Hemohilia of SC and several other patient organizations submit a letter of support to Chairman Howard on H3956, to establish a Rare Disease Advisory Council in South Carolina

NORD Submits Letter of Supporting Telehealth for House Energy & Commerce Health Subcommittee Hearing: The Future of Telehealth: How COVID-19 Is Changing the Delivery of Virtual Care

NORD letter to Governor Northam of Virginia requesting he sign HB 1995 and HB 2332 into law to create an RDAC and state-based reinsurance program

NORD and 21 Other Organizations Send Letter to House Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening

NORD and 21 Other Organizations Send Letter to Senate Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening

NORD Letter to the Arizona House Health and Human Services Committee regarding step therapy reform

NORD and 13 additional patient organizations submit letter expressing continued support for Medicaid expansion in Arkansas

NORD, American Heart Association, and 50 other Patient Organizations Sign on to Letter to House Labor, HHS Subcommittee on Appropriations Requesting Increased Funding for CDC’s National Center for Chronic Disease Prevention and Health Promotion

NORD, American Heart Association, and 50 other Patient Organizations Sign on to Letter to Senate Labor, HHS Subcommittee on Appropriations Requesting Increased Funding for CDC’s National Center for Chronic Disease Prevention and Health Promotion

NORD Letter to Arkansas Representative Gray regarding recent amendments to SB 143

Coalition letter to members of the Rhode Island House Committee on Health and Human Services in support of, HB 5704, step therapy reform legislation.

NORD letter to the California Assembly Committee on Health regarding utilization management

Coalition letter to Governor Murphy and the NJ Senate in support of, A4815/S3051, step therapy reform legislation.

NORD letter of thanks to Rep. Paul Hollis, sponsor of Louisiana HB 460, a bill to create a Rare Disease Advisory Council

NORD joins coalition letter urging the federal government to rescind rules that weaken the beneficiary protections in the Families First Coronavirus Response Act (FFCRA)

NORD, Hemophilia of SC and 11 other patient organizations submit a letter of support to the South Carolina House Medical, Military, Public, and Municipal Affairs Committee in support of House Bill 3956 to establish an RDAC

CDC Response to NORD, ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation Letter to CDC Director, Dr. Walensky, Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine

NORD letter of support for the nomination of Andrea Palm to be Deputy Secretary of Health and Human Services.

NORD letter of support for the nomination of Chiquita Brooks-LaSure to be Administrator of the Centers for Medicare and Medicaid Services.

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