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Rare Action Network > Events > All Events > New Jersey Rare Disease Day
New Jersey Rare Disease Day
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Date/Time
March 05, 2018
8:30 am - 3:30 pm
Location
New Jersey Museum
Categories
A Better World for People Living with Rare Diseases: State, National, and Global Action
TO REGISTER CLICK HERE
Sponsored by, BioNJ, HINJ and NORD
Takes place at the New Jersey Museum at 205 West State Street, in Trenton.
From 8:30 a.m. – 3:30 p.m. on March 5.
AGENDA: (Final Speakers and Times, subject to change)
8:30 – 9:00 Continental Breakfast and open 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
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Michael Losow, Amicus Therapeutics, Moderator
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Sarah Balog Leukemia Lymphoma Society
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Bill Cummings, Rare Disease Advocate
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Stephanie Fischer, Rare Disease Patient Advocate
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Paul Melmeyer, NORD
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Rebecca Perkins, BioNJ
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Hemophilia Treatment Center/Distribution Company representative, TBD
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:
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Julie Raskin, CHI Executive Director, Moderator
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Susanne Fitch, M.B.A. Commercial Advisor Zealand Pharma
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Dominique Goodson, SCD Patient Advocate
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Anita Gupta, M.D. Anesthesiologist, Pain Management, Pharmacologist, Princeton U.
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Michelle Hall, EB Patient Advocate
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Katherine Lord, MD, CHOP
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John Maslowski, President and CEO, Fibrocell