Written by Laura Mullen on November 19, 2020
Washington, DC—November 19, 2020: Today, the National Organization for Rare Disorders (NORD®) published a comprehensive report through its RareInsights™ initiative: Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis. As part of an ongoing missionRead More
Written by Laura Mullen on October 15, 2020
A new article on PsychologyToday.com, “People with Rare Diseases Need Better Social Support,” examines a new study that shows which types of support most benefit those with rare diseases. NORD is mentioned in the article and our RareInsights rare disease factsheet (see above) is prominently featured.
Written by Lisa Sencen on November 19, 2018
Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.
This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community…. Read More
Written by Laura Mullen on October 18, 2018
Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the U.S. in 2017, according to a new study released today by the IQVIA Institute. The study… Read More
Written by Jennifer Huron on September 6, 2018
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate. Our policy, research and other efforts have played a significant… Read More