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NJ Business and Industry Association (NJBIA)
10 West Lafayette Street
The Patient Voice in New Jersey - A Rare Disease Day Event in Trenton
In keeping with this year’s global Rare Disease Day slogan “Join us in making the voices of rare diseases heard,” advocates in New Jersey will gather in Trenton for a training session on building relationships with legislators and other policymakers to educate and advocate on behalf of rare disease patients.
The training will take place at the New Jersey Business and Industry Association (NJBIA) at 10 West Lafayette Street from 10:00 a.m. – 11:30 a.m. on February 29. The training will be led by experts at BioNJ and HINJ.
Following the training session, patient advocates will walk to the State House to meet with legislators. The day’s events are being sponsored by BioNJ, HINJ, New Jersey Rare Disease Alliance and NORD*.
Tentative Event Schedule
10:00 – 10:30 Registration, refreshments, networking
10:30 – 10:35 Welcoming Remarks
Julie Raskin, CHI
10:35 – 10:40 The NJ Perspective
Debbie Hart, BioNJ
Dean Paranicas, HINJ
10:40 – 10:55 Process and Relationships
Haskell Berman, HINJ
10:55 – 11:10 How to Prepare for Meetings with Legislators
Rebecca Perkins, BioNJ
11:10 - 11:20 Case Study, Assembly Bill a-2337 (Requires health insurers to limit patient cost-sharing and provide appeal process concerning certain prescription drug coverage.)
11:20 – 11:30 One Day at a Time, an original song and #stoptheMaDnesS campaign
Janna Pelle, MDS Foundation
11:45 We walk together to the NJ State House
12:00 Meet with Legislators (We will seek out appointments)
12:45 Meet with Senator Robert Gordon of the 38th District, Conference Majority Leader in the Senate Annex
Senator Diane Allen will also be coming to share a few words about Rare Disease Day and will present a ceremonial Rare Disease Day proclamation.
*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.In keeping with this year’s global Rare Disease Day slogan “Join us in making the voices of rare diseases heard,” advocates in New Jersey will gather in Trenton for a training session on building relationships with legislators and other policymakers to educate and advocate on behalf of rare disease patients.