Search Results for: reports_by_letter.html

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

Policy Statement

NORD and 19 other patient organizations submit a letter to the GA House Health and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council

Policy Statement

NORD joins 40 patient organizations in submitting a letter to the administration to request the reinstatement of guaranteed emergency paid sick and family caregiving leave for all U.S. workers

Policy Statement

NORD joins 78 other organizations on a letter to include the “Newborn Screening Saves Lives Reauthorization Act of 2021” in the omnibus spending bill for FY 2022

Policy Statement

NORD and 28 national patient organizations send letter to Congressional Leaders urging them to continue to work to enact policies that expand access to quality and affordable healthcare in the budget reconciliation process

Policy Statement

NORD joins 21 other organizations in signing onto letter providing feedback to the Healthy Future Task Force’s Affordability request for information.

Policy Statement

NORD and 16 other patient organizations submit a letter to Colorado Senate leadership to support Senator Ginal’s draft legislation to create a Rare Disease Advisory Council

Policy Statement

NORD joins 19 other organizations in signing onto letter to CMS CCIIO regarding their proposed risk adjustment policy that was included in the NBPP 2023

Policy Statement

NORD and 16 other patient organizations submit a letter to Governor Polis to support Senator Ginal’s draft legislation to create a Rare Disease Advisory Council

Policy Statement

NORD joins 20 organizations in signing letter to the Minnesota House Health Finance and Policy committee to support the copay-only bill language in HF 3717

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Search Results for: reports_by_letter.html

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

NORD and 19 other patient organizations submit a letter to the GA House Health and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council

NORD joins 40 patient organizations in submitting a letter to the administration to request the reinstatement of guaranteed emergency paid sick and family caregiving leave for all U.S. workers

NORD joins 78 other organizations on a letter to include the “Newborn Screening Saves Lives Reauthorization Act of 2021” in the omnibus spending bill for FY 2022

NORD and 28 national patient organizations send letter to Congressional Leaders urging them to continue to work to enact policies that expand access to quality and affordable healthcare in the budget reconciliation process

NORD joins 21 other organizations in signing onto letter providing feedback to the Healthy Future Task Force’s Affordability request for information.

NORD and 16 other patient organizations submit a letter to Colorado Senate leadership to support Senator Ginal’s draft legislation to create a Rare Disease Advisory Council

NORD joins 19 other organizations in signing onto letter to CMS CCIIO regarding their proposed risk adjustment policy that was included in the NBPP 2023

NORD and 16 other patient organizations submit a letter to Governor Polis to support Senator Ginal’s draft legislation to create a Rare Disease Advisory Council

NORD joins 20 organizations in signing letter to the Minnesota House Health Finance and Policy committee to support the copay-only bill language in HF 3717

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

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