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RECENT NEWS

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Orphan Drug Expenditures In The United States: A Historical And Prospective Analysis, 2007–18

With debate around the costs of prescription drugs swirling, a new report was issued from IMS Health detailing future spending on orphan drugs. The authors found that despite growth in the number of available treatments, overall oprhan drug spending will continue to be sustainable in the future.
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Editorial: "Why I'm Stepping Out of My Comfort Zone and Into My Congressman's Office for Rare Disease

TheMighty published an editorial by Sharon Rose on the need for the rare disease community to advocate in support of the 21st Century Cures Act: Rare disease has changed my life in many ways, but the most unexpected recent change has been my interest in laws and political issues regarding health care and treatment options. You see, I am a right brainer. I enjoy and flourish in the arts. I’ve never jumped for joy while taking a math or science class. I can recall looking up medical terminology after diagnoses and subsequent MRI or test reports years ago, and how strange it was for me to learn about medicine. I was in a new arena and out of my comfort zone.
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Little News is Good News

An editorial published by the Alliance for a Stronger FDA staff: What do the opioid legislation, the Zika legislation and Cures/Innovations bills have in common, other than that they are “hot button” issues? In each case, Congress has done its best to seriously consider healthcare problems facing our nation and managed to find compromises in order to reach consensus. Also — significantly — the three pieces of legislation are stalled by funding issues.

About RDLA

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.

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