Search Results for: orgs_by_letter.html

Policy Statement

NORD Signs-on to Ad-Hoc Letter to Support NIH Funding for Fiscal Year 2026

Policy Statement

NORD joins letter urging CMS to implement appropriate guardrails on utilization management in Part D

Policy Statement

NORD joins leading patient groups in letter to Congress urging protection for Medicaid during budget reconciliation process

Policy Statement

NORD Joins Over 100 Patient Organizations in Letter Urging Congress to Fully Fund Congressionally Directed Medical Research Programs

Policy Statement

NORD signs-on to letter supporting the Clinical Trial Modernization Act (H.R. 8412)

Policy Statement

NORD Sends Letter to New York State Department of Health Commissioner Asking for a Permanent NY RDAC in FY26

Policy Statement

NORD signs on letter supporting the passage of the PASTEUR Act

Policy Statement

NORD Signs on to Letter of Support for the Innovation in Pediatric Drugs Act of 2024 (S. 4905)

Policy Statement

NORD Responds to Letter of False Accusations Sent to Our Patient Advocacy Members

Policy Statement

NORD Issues Letter of Support for A10292 (Paulin) – Creating a Permanent RDAC in New York State

Policy Statement

NORD joins letter supporting H.R. 5397, a bill to increase access to home infusion for Medicare patients

Policy Statement

NORD letter of support to the Michigan Speaker of the House in support of House Bill 4654, legislation to establish a Rare Disease Advisory Council (RDAC)

Policy Statement

NORD, MDA, and FARA letter to House and Senate Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on supporting rare disease programs at NCATS in FY22

Policy Statement

NORD joins with American Academy of Pediatrics and 18 organizations in letter to Congressional Appropriators to support the Pediatric Device Consortia Grant Program at FDA

Policy Statement

NORD joins Friends of Cancer Research and 50 other organizations in letter to the Senate supporting the nomination of Dr. Robert Califf to be Commissioner of the FDA

Policy Statement

NORD and more than 140 organizations submit letter of support for H.R. 5801, the ‘HELP Copays Act’

Policy Statement

NORD and 12 other patient organizations submit a letter to the MI Senate Health Policy and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council

Policy Statement

NORD joins the NW Rare Disease Coalition and 21 other organizations in letter to the Washington Legislature asking for their support to create an RDAC

Policy Statement

NORD and 12 other patient organizations submit letter of support to the Wisconsin Assembly Committee on Health urging them to support a Rare Disease Advisory Council

Policy Statement

NORD and coalition partners send letter to Congressional leaders asking that they increase funding for CDC and HRSA newborn screening programs

Policy Statement

NORD letter of thanks to Sen. John Jagler, sponsor of Wisconsin SB 689, a bill to create an a Rare Disease Advisory Council

Policy Statement

NORD letter of thanks to Sen. Jeff Holy, sponsor of Washington SB 5886, a bill to create a Rare Disease Advisory Council

Policy Statement

NORD and 17 other patient organizations submit a letter to the MS House Public Health and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council

Policy Statement

Coalition letter to the Administration to issue new regulations limiting the sale and availability of short-term, limited-duration plans (STLDs)

Policy Statement

NORD submits letter of support to the ME Committee on Appropriations and Financial Affairs in support of Legislative Document 972, Rare Disease Advisory Council legislation

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Search Results for: orgs_by_letter.html

NORD Signs-on to Ad-Hoc Letter to Support NIH Funding for Fiscal Year 2026

NORD joins letter urging CMS to implement appropriate guardrails on utilization management in Part D

NORD joins leading patient groups in letter to Congress urging protection for Medicaid during budget reconciliation process

NORD Joins Over 100 Patient Organizations in Letter Urging Congress to Fully Fund Congressionally Directed Medical Research Programs

NORD signs-on to letter supporting the Clinical Trial Modernization Act (H.R. 8412)

NORD Sends Letter to New York State Department of Health Commissioner Asking for a Permanent NY RDAC in FY26

NORD signs on letter supporting the passage of the PASTEUR Act

NORD Signs on to Letter of Support for the Innovation in Pediatric Drugs Act of 2024 (S. 4905)

NORD Responds to Letter of False Accusations Sent to Our Patient Advocacy Members

NORD Issues Letter of Support for A10292 (Paulin) – Creating a Permanent RDAC in New York State

NORD joins letter supporting H.R. 5397, a bill to increase access to home infusion for Medicare patients

NORD letter of support to the Michigan Speaker of the House in support of House Bill 4654, legislation to establish a Rare Disease Advisory Council (RDAC)

NORD, MDA, and FARA letter to House and Senate Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on supporting rare disease programs at NCATS in FY22

NORD joins with American Academy of Pediatrics and 18 organizations in letter to Congressional Appropriators to support the Pediatric Device Consortia Grant Program at FDA

NORD joins Friends of Cancer Research and 50 other organizations in letter to the Senate supporting the nomination of Dr. Robert Califf to be Commissioner of the FDA

NORD and more than 140 organizations submit letter of support for H.R. 5801, the ‘HELP Copays Act’

NORD and 12 other patient organizations submit a letter to the MI Senate Health Policy and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council

NORD joins the NW Rare Disease Coalition and 21 other organizations in letter to the Washington Legislature asking for their support to create an RDAC

NORD and 12 other patient organizations submit letter of support to the Wisconsin Assembly Committee on Health urging them to support a Rare Disease Advisory Council

NORD and coalition partners send letter to Congressional leaders asking that they increase funding for CDC and HRSA newborn screening programs

NORD letter of thanks to Sen. John Jagler, sponsor of Wisconsin SB 689, a bill to create an a Rare Disease Advisory Council

NORD letter of thanks to Sen. Jeff Holy, sponsor of Washington SB 5886, a bill to create a Rare Disease Advisory Council

NORD and 17 other patient organizations submit a letter to the MS House Public Health and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council

Coalition letter to the Administration to issue new regulations limiting the sale and availability of short-term, limited-duration plans (STLDs)

NORD submits letter of support to the ME Committee on Appropriations and Financial Affairs in support of Legislative Document 972, Rare Disease Advisory Council legislation

Make 2026 Count: Gift research, care, and advocacy for families everywhere

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