New Jersey Rare Disease Alliance
Commemorates Global Rare Disease Day 2017
Program to Focus on Innovation, Research and Access
The New Jersey Rare Disease Alliance, dedicated to improving the lives of the more than 800,000 rare disease patients in New Jersey, will hold its annual Rare Disease Day commemoration on Monday, February 27 in honor of Rare Disease Day, at the New Jersey Business and Industry Association (NJBIA), 10 West Lafayette Street, Trenton from 9:00 a.m.-12:00 p.m.
The event is co-sponsored by BioNJ, the HealthCare Institute of NJ (HINJ) and the National Organization for Rare Diseases (NORD). The program will start with a networking hour followed by speakers from the rare disease community including patients, patient advocates, legislators, biomedical healthcare professionals and industry leaders.
Debbie Hart, President and Chief Executive Officer of BioNJ, will speak about the Climate of Innovation in New Jersey for Rare Disease Drug and Device Development. Other highlights include insights into effectively including the patient voice in drug development, real-world patient stories, information about the Catastrophic Illness in Children Relief Commission, updates on the growing academic research community in the state and legislation that supports the needs of people with rare diseases. In addition, members of the New Jersey Legislature will also present a ceremonial resolution commemorating Rare Disease Day 2017 in New Jersey.
“We are very excited about this year’s agenda,” commented Julie Raskin, Executive Director of Congenital Hyperinsulinism International and co-founder of the New Jersey Rare Disease Alliance. “Innovation, research and access are all fundamental to the future of rare disease patients and New Jersey has taken a leading role. We are delighted with the progress that has been made and we are looking forward to continue to work together. Everyone in the rare disease community is invited to attend this important event and to learn, share and participate. Together we are stronger than any of us are alone.”
To register for Rare Disease Day 2017 in Trenton, please use this link: https://www.eventbrite.com/e/2017-rare-disease-day-event-in-trenton-tickets-31474767878.
