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
After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.
For example, we had greatly… Read More
During the 2017 Rare Diseases & Orphan Products Breakthrough Summit over 700 individuals from the rare disease community gathered to advance the dialogue in rare diseases. NORD was pleased to have a large group of student chapter leaders involved with the event in 2017. One leader,… Read More
Washington, D.C., December 13, 2016—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… Read More