Posted at November 11, 2017 11:20 am by Jennifer Huron
Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases
Washington, D.C., November 28, 2017 – Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill being debated in… Read More
Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new documentary released today, see how the National Organization for Rare Disorders (NORD) partnered with Peyton’s hometown to turn one special… Read More
Posted at October 10, 2017 09:31 am by Jennifer Huron
Orphan Drugs Account for Only 7.9% of Drug Spending in the U.S.
Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, according to a study issued today by the QuintilesIMS Institute. The study, commissioned by the National Organization for Rare Disorders (NORD), analyzed the role of the… Read More
Posted at October 10, 2017 12:17 pm by Jennifer Huron
Danbury, CT and Washington, D.C., October 13, 2017—Do you know a person or company that is making a difference in the fight against rare diseases? Submit a nomination for the 2018 Rare Impact Awards by January 12: rarediseases.org/rare-impact-awards.
The Rare Impact Awards celebrates efforts to help the 30 million Americans with rare diseases who, by the very nature of their… Read More