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February 7, 2023<\/b>, Washington, D.C.<\/b> \u2013 The National Organization for Rare Disorders (NORD\u00ae) today published the latest edition of its annual State Report Card, which for the past eight years has rated all 50 states and the District of Columbia on important issues affecting the more than 25 million Americans living with a rare disease.<\/span><\/p>\n This year\u2019s State Report Card was compiled using data through November 2022 and provides a detailed analysis of each state\u2019s performance on nine major policy areas of importance to the rare disease community such as newborn screening, Medicaid eligibility, and prescription drug out-of-pocket cost protections.<\/span><\/p>\n \u201cNORD\u2019s State Report Card is an important tool for highlighting progress and identifying remaining barriers for rare disease patients from coast to coast,\u201d said <\/span>Heidi Ross, NORD\u2019s Vice President of Policy and Regulatory Affairs<\/b>. \u201cThis easy-to-use resource shows how effectively states are serving individuals and families living with rare diseases, highlights advances being made across the country, and identifies where we still need to work together and focus our attention.\u201d<\/span><\/p>\n Key takeaways from the new report include:<\/span><\/p>\n \u201cThis year\u2019s report showcases some important improvements,\u201d Ross said. \u201cBut it also shows just how far we still need to go to create policies that ensure people with rare diseases can thrive.\u201d<\/span><\/p>\n You can view and download the full state-by-state report cards \u2014 including maps, patient stories, and resources \u2014\u00a0by visiting: https:\/\/bit.ly\/State-Report-Cards<\/a><\/strong>. <\/p>\n About the National Organization for Rare Disorders (NORD)<\/b><\/p>\n With a 40-year history of advancing care, treatments and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the more than 25 million Americans living with a rare disease. NORD, a 501(c)(3) nonprofit, is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 330 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research and policy. For more information, please visit <\/span>https:\/\/rarediseases.org\/<\/span><\/a>.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":" Patient access to care and services improved across key policy areas in 2022, but challenges remain for the rare disease community February 7, 2023, Washington, D.C. \u2013 The National … <\/p>\n\n
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\n<\/span>To learn more about NORD\u2019s policy work, visit: <\/span>https:\/\/bit.ly\/Policy-Issues<\/span><\/a>.<\/span><\/p>\n