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NJ State Museum
Riverside Court (1st Floor)
205 West State Street
A Rare Disease Day Event in Trenton
Rare Disease Day - A Better World for People Living with Rare Diseases: State, National and Global Action.
The event will take place at the NJ State Museum, Riverside Court (1st Floor), 205 West State Street, Trenton, NJ.
The day’s events are being sponsored by BioNJ, HINJ, and NORD.
Final speakers and times subject to change
8:30 - 9:00 Continental Breakfast and networking
9:00 - 9:05 Opening Remarks, Ellynn Szoke, NJ Rare Disease Alliance
9:05 - 9:55 Effective Advocacy Panel and Q&A - Real World Advice
9:55 - 10:00 Speaker Introduction by Dean J. Paranicas, President & CEO, HINJ
10:00 - 10:30 Keynote Speaker and Q&A Congressman Leonard Lance (R - NJ Dist. 7)
10:30 - 10:45 Break
10:45 - 10:50 Speaker Introduction by Debbie Hart, BioNJ President &CEO
10:50 - 11:15 NJ Dept. of Health, Office of Commissioner and Q&A
11:15 - 12:00 Clinical Development Panel Discussion and Q&A, Panelists:
12:00 - 12:30 Closing Remarks and Lunch, Ellynn Szoke, NJ Rare Disease Alliance
12:30 - 12:45 Walk to State House
12:45 - 3:30 State House Individual meetings with State Representatives
*NORD (The National Organization for Rare Disorders) is the official sponsor of Rare Disease Day in the US. They have inspired advocates around the country to hold events in their state capitols. Last year there were 32 State House events across the United States. State House Events provide an opportunity to meet face-to-face with your elected officials and advocate for legislation that directly affects the rare disease community.