Washington, DC, March 20, 2018—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network® (NORD RAN). The 2018 “State Report Card” indicates that progress in several areas of health policy…
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Tags: 2018 State Report Card, biosimilars, Children's Health Insurance Program, Medicaid, Medical Foods, newborn screening, NORD RAN, Prescription Drug Cost Sharing, Rare Action Network, Right to Try
August 15, 2017
TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage
Posted at August 8, 2017 09:49 am by Christina Jensen
It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare disease stakeholders come together to advance the dialogue on these… Read More
Tags: Dr. Scott Gottlieb, FDA, healthcare, healthcare reform, Mike Porath, NORD Rare Summit, NORD Summit, Orphan Drug Act, Orphan products, Policy, Rare Diseases, Rare Diseases and Orphan Products Brekathrough Summit, Rare Summit, The Mighty
January 18, 2016
TOPIC: Events, Featured News, Get Involved, Sticky Posts for Homepage
Posted at January 1, 2016 04:25 pm by Christina Jensen
For the ninth consecutive year, runners will join together to help raise awareness for rare diseases while fundraising to support the NORD Undiagnosed Diseases Network (UDN) Patient Assistance Program.
The 2016 team is looking for runners to join the Boston, Providence Marathon and half Marathon teams, as well as RARE Community Partners. When you join the Running for Rare Team,… Read More
Tags: Boston Marathon, NYC Marathon, Providence Marathon, Rare Diseases, Running, Running for Rare Diseases, Running4Rare, Undiagnosed Diseases, Undiagnosed Diseases Network, Undiagnosed Diseases Patient Assistance Program
