{"id":59235,"date":"2021-01-27T14:25:06","date_gmt":"2021-01-27T19:25:06","guid":{"rendered":"https:\/\/rarediseases.org\/nord-state-report-card-grades-states-on-policy-issues-critical-to-rare-disease-patients\/"},"modified":"2021-01-27T14:25:06","modified_gmt":"2021-01-27T19:25:06","slug":"nord-state-report-card-grades-states-on-policy-issues-critical-to-rare-disease-patients","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-state-report-card-grades-states-on-policy-issues-critical-to-rare-disease-patients\/","title":{"rendered":"NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients"},"content":{"rendered":"

Washington, DC, January\u00a0<\/span><\/b>27<\/span><\/b>, 202<\/span><\/b>1<\/span><\/b>\u2014<\/span><\/b>Today, the<\/span>\u00a0<\/span><\/b>National Organization for Rare Disorders (NORD\u00ae) and its Rare Action Network (RAN\u2122) published\u00a0<\/span>t<\/span>he<\/span>\u00a06<\/span>th<\/span>\u00a0Edition of the State Report Card<\/span>, the annual report rating<\/span>\u00a0<\/span>each\u00a0<\/span>state and Washington, DC on\u00a0<\/span>the most important\u00a0<\/span>issues directly\u00a0<\/span>affecting<\/span>\u00a0<\/span>more than 25 million American<\/span>s<\/span>\u00a0<\/span>living with rare diseases<\/span>. Despite a year marked by devastating impacts\u00a0<\/span>from the COVID-19<\/span>\u00a0pandemic<\/span>,<\/span>\u00a0the State Report Card<\/span>\u00a0<\/span>demonstrates that<\/span>\u00a0<\/span>progress\u00a0<\/span>was\u00a0<\/span>made<\/span>\u00a0<\/span>in many states<\/span>\u00a0<\/span>on<\/span>\u00a0<\/span>newborn screening,\u00a0<\/span>step therapy<\/span>,<\/span>\u00a0<\/span>R<\/span>are\u00a0<\/span>D<\/span>isease\u00a0<\/span>A<\/span>dvisory\u00a0<\/span>C<\/span>ouncils<\/span>\u00a0and other key<\/span>\u00a0policies<\/span>.<\/span>\u00a0<\/span>The report<\/span>\u00a0also<\/span>\u00a0notes the need for states to take additional steps to address out-of-pocket prescription drug costs for rare disease patients<\/span>\u00a0and to\u00a0<\/span>protect patient access to<\/span>\u00a0<\/span>affordable, comprehensive health care serv<\/span>ices<\/span>.<\/span>\u00a0<\/span><\/p>\n

\u201cThe\u00a0<\/span>State Report Card\u00a0<\/span>provides\u00a0<\/span>insight into<\/span>\u00a0the<\/span>\u00a0<\/span>advances<\/span>\u00a0being made\u00a0<\/span>at<\/span>\u00a0the state level in supporting Americans living with rare diseases<\/span>, and\u00a0<\/span>identifies\u00a0<\/span>where we still need to focus attention<\/span>,\u201d said NORD President and CEO, Peter L. Saltonstall. \u201cFor almost 40 years, NORD has\u00a0<\/span>served as<\/span>\u00a0the voice of the rare disease community<\/span>, and we are committed to fighting<\/span>\u00a0for\u00a0<\/span>rare\u00a0<\/span>disease<\/span>\u00a0<\/span>patients and<\/span>\u00a0policy changes\u00a0<\/span>that will make a difference in their lives.\u00a0<\/span>Our hope is that\u00a0<\/span>patients, advocates and policymakers\u00a0<\/span>find<\/span>\u00a0the new State Report Card site<\/span>\u00a0<\/span>a\u00a0<\/span>useful\u00a0<\/span>tool\u00a0<\/span>in their work on policies\u00a0<\/span>to best meet\u00a0<\/span>the needs of\u00a0<\/span>rare patients and families<\/span>.<\/span>\u201d<\/span>\u00a0<\/span><\/p>\n

The<\/span>\u00a0<\/span>6th<\/span>\u00a0Edition<\/span>\u00a0of the State Report Card<\/span>,\u00a0<\/span>compiled using data current as of November 2020<\/span>, is presented in a new\u00a0<\/span>digital\u00a0<\/span>format<\/span>,\u00a0<\/span>providing<\/span>\u00a0<\/span>improved accessibility<\/span>\u00a0to\u00a0<\/span>the information contained in previous editions<\/span>,<\/span>\u00a0<\/span>as well as<\/span>\u00a0additional\u00a0<\/span>r<\/span>esources.<\/span>\u00a0<\/span>The report<\/span>\u00a0<\/span>pr<\/span>ovides<\/span>\u00a0detailed analysis across<\/span>\u00a0<\/span>eight<\/span>\u00a0major polic<\/span>ies<\/span>,\u00a0<\/span>grading<\/span>\u00a0each state on\u00a0<\/span>its<\/span>\u00a0performance<\/span>\u00a0in those areas<\/span>.<\/span>\u00a0<\/span>T<\/span>akeaways<\/span>\u00a0<\/span>from the\u00a0<\/span>new\u00a0<\/span>report<\/span>\u00a0<\/span>include:<\/span>\u00a0<\/span><\/p>\n