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
Policy Statement NORD joins 14 patient organizations in a letter to the D.C. City Council’s Committee on Health opposing the exemption of professional employer organizations from vital patient protections
Policy Statement NORD and 29 patient organizations submit a letter of support for expanding access to biomarker testing in Ohio
Policy Statement NORD and 14 other patient organizations submit a letter to the ME Appropriations & Financial Affairs Committee in support of LD 972 to establish a Rare Disease Advisory Council
Policy Statement NORD joins 26 patient organizations in letter to congressional leadership to reinstate guaranteed emergency paid sick and family caregiving leave.
Policy Statement NORD joins 7 other patient organizations on a letter to support an amendment to Hawaii packaging bill, HB2399, that could impact the price and access to several food and beverage items, including infant formula, medical foods, and foods for special dietary use.
Policy Statement NORD and 9 patient organizations sign onto a comment letter to the WA State Office of the Insurance Commissioner on the draft for health care sharing ministries
Policy Statement NORD joins with American Academy of Pediatrics and 16 organizations in letter to Congressional Appropriators to support the Pediatric Device Consortia Grant Program at FDA
Policy Statement NORD submits a letter of support to the CT Speaker of the House in support of House Bill 5260 to establish a Rare Disease Advisory Council
Policy Statement NORD and 14 other patient organizations send a letter to Governor Polis urging him to sign SB 186 into law, legislation to establish a CO Rare Disease Advisory Council
Policy Statement NORD and 13 patient organizations submit a letter in support of Alaska’s 1332 reinsurance waiver demonstration
Policy Statement NORD and 11 patient advocacy organizations submit letter to HHS regarding New Jersey’s Section 1115 waiver application
Policy Statement NORD and 12 organizations send comment letter to Secretary Yellen and Secretary Becerra on Minnesota’s Section 1332 State Innovation Waiver Extension Application