March 5, 2018 8:40 pm
13Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing...
November 14, 2017 7:50 pm
3RUN is a proud partner of the Rare Disease Congressional Caucus An accurate diagnosis is usually the first step in developing a treatment plan for a patient, but it...
October 31, 2016 8:09 pm
4EveryLife Foundation for Rare Diseases Nominees Federal Advocacy – Congressional Staff Nico Janssen, Legislative Assistant, Office of Senator Maria Cantwell, Lymphedema Treatment Act Molly McDonnell, Senior Health Policy Advisor, Office...
April 7, 2016 6:32 pm
8Senator Hatch’s remarks from the hearing yesterday: “This amendment contains the provisions of the Open act, a bill I’m sponsoring with Senator Klobuchar to promote new therapies for...