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
News National Organization for Rare Disorders (NORD) Launches the Living Rare Study – First to Measure Full Scope of Rare Disease Challenges
News NORD Announces 2024 Rare Impact Award Honorees, Emmy Award-Winning Journalist, Peter Alexander to Host
News The Needs of Rare Disease Patients Cannot Be Forgotten in this Week’s Congressional Hearing on Lab Developed Diagnostic Tests (LDTs)
News NORD and the Galactosemia Foundation Jointly Publish First “Voice of the Patient” Report to Help Inform the FDA and Researchers
