The New Jersey Rare Disease Alliance is holding its annual Rare Disease Day today, starting today at 8:30 a.m. at thein Trenton. The program, "A Better World for People Living with Rare Diseases: State, National, and Global Action, "features Republican Congressman Leonard Lance (NJ-7), co-chair of the Rare Disease Caucu, as the keynote.
The alliance estimates there are 800,000 rare-disease patients in New Jersey. The group's mission is to bring attention to the issues these patients face and to work with advocates, legislators, biopharmaceutical and life-science industry executives, healthcare professionals, and academia to address these issues.
The event is co-sponsored by the National Organization for Rare Diseases (NORD), HealthCare Institute of New Jersey (HINJ) and BioNJ, which represents the biotechnology industry in the state.
The state Senate justthat would make Rare Disease Day the last day in February.
to register for Rare Disease Day 2018.