For more information, please contact:
julie@njrarediseasealliance.org


Media inquiries, please contact:
ellynn@njrarediseasealliance.org


Event Location: 

NJ Business and Industry Association (NJBIA)

10 West Lafayette Street 

Trenton, NJ


New Jersey Rare Disease Day Event

Monday,  February 29th, 2016


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.)
                                        Speaker, TBA

 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.  

NJRareDiseaseAlliance