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Global Rare Disease Day 2018

March 5, 2018 @ 8:30 am - 12:30 pm

The New Jersey Rare Disease Alliance will hold its annual Rare Disease Day commemoration on Monday, March 5, at the New Jersey State Museum, 205 W. State Street, Riverview Court (1st floor), Trenton, from 8:30 a.m.-12:30 p.m. Entitled “A Better World for People Living with Rare Diseases: State, National and Global Action”, this year’s event will feature Congressman Leonard Lance, Co-Chair of the Rare Disease Caucus of the United States Congress, as the keynote speaker.

Co-sponsored by the National Organization for Rare Diseases (NORD), BioNJ, and the HealthCare Institute of New Jersey (HINJ), the event will begin with networking and a continental breakfast followed by two panels, “Effective Advocacy – Real World Advice” and “A Collaborative Approach to Rare Disease Treatment Development”. Panelists will feature representatives from the rare disease community including patients, patient advocates, biomedical healthcare professionals, and industry leaders. Attendees will also hear from members of the New Jersey legislature. Following lunch, all in attendance are invited to walk to the State House and engage with legislators and staff about issues of concern to the rare disease community.

This is an important event for the rare disease community to connect, learn, and share and we invite everyone to attend,” commented Ellynn Szoke, co-founder of the New Jersey Rare Disease Alliance. “This year’s panels have participants from across the rare disease continuum and offer a wonderful opportunity to understand the challenges and successes in both clinical development and the legislative process. It is important for patients and advocates to understand how their voices can be integrated into both. We look forward to continuing to work together to strengthen the impact of the rare disease community in New Jersey. Together we are stronger than any of us are alone.”

Click here to register for Rare Disease Day 2018 in Trenton.

Details

Date:
March 5, 2018
Time:
8:30 am - 12:30 pm