The New Jersey Rare Disease Alliance is holding its annual Rare Disease Day today, starting today at 8:30 a.m. at the New Jersey State Museum in 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 just passed a bill that would make Rare Disease Day the last day in February.
Follow this link to register for Rare Disease Day 2018.