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NORD Report Shows Key Policy Improvements Were Achieved by States in 2019 But More Progress Is Needed to Support Americans Living with Rare Diseases

January 31, 2020 GMT
National Organization for Rare Disorders (NORD) logo. (PRNewsFoto/National Organization for Rare Disorders (NORD))
National Organization for Rare Disorders (NORD) logo. (PRNewsFoto/National Organization for Rare Disorders (NORD))

WASHINGTON, Jan. 30, 2020 /PRNewswire/ -- According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™), while many US states took powerful steps forward in 2019, there is major work yet to be done on a number of policy issues critical to over 25 million Americans affected by rare diseases. The mission of RAN, the nation’s leading rare disease advocacy network, is to ensure that the rare community is represented and supported in all 50 states and to advocate for changes that better the lives of patients and caregivers.

“States have made a great deal of progress in supporting Americans living with rare diseases. But there is still much more that needs to be done,” said NORD President and CEO, Peter L. Saltonstall. “The goal of the State of the States Report is to share concrete and current information that will empower advocates to affect change in their states. NORD is committed to ensuring that the patient voice is heard loud and clear when important policy decisions affecting their lives are made at the state and national levels.”

The annual State of the States Report issues grades to every state and Washington, DC on issues that directly impact the lives of rare disease patients and caregivers. The newly released 5th Edition reveals that positive strides were made in 2019 on pivotal policies including access to medications for patients and newborn screening, while further efforts are still needed on Medicaid coverage and the creation of rare disease advisory councils. Key takeaways of the report include:

The 5th Edition of the comprehensive State of the States Report provides detailed analysis across eight major policy issues:

For more information and to view the state-by-state report cards, maps, contacts, resources and to download a full copy of the State of the States Report, visit rareaction.org.

About the National Organization for Rare Disorders (NORD®)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children.

NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with over 300 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.

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SOURCE National Organization for Rare Disorders (NORD)