Rare Disease Report

Rare Disease Day in New Jersey

FEBRUARY 13, 2017
RDR Staff
The New Jersey Rare Disease Alliance, along with BioNJ, the HealthCare Institute of NJ (HINJ) and the National Organization for Rare Diseases (NORD), will host its annual Rare Disease Day event on the morning of February 27, 2017 in Trenton, New Jersey. 
The program provides an opportunity for patients, patient advocates, legislators, biomedical healthcare professionals and industry leaders in New Jersey to meet each other and discuss ways to improve how rare disease patients are managed in New Jersey.
During the 3 hour program, Debbie Hart, President and Chief Executive Officer of BioNJ, and Dean J. Paranicas, President and Chief Executive Officer of HINJ, 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 a news release, Julie Raskin, Executive Director of Congenital Hyperinsulinism International and co-founder of the New Jersey Rare Disease Alliance, said, “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, click here.

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