New Jersey Rare Disease Alliance Commemorates Global Rare Disease Day 2017

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Media Contact:

Ellynn Decter Szoke

973-761-4403

[email protected]

 

 

Program to Focus on Innovation, Research and Access

 

Glen Ridge, NJ (February 13, 2017) —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, at the New Jersey Business and Industry Association (NJBIA), 10 West Lafayette Street, Trenton from 9:00 AM-12:00 PM.

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, 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 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.

 

About The New Jersey Rare Disease Alliance

The New Jersey Rare Disease Alliance is a working group dedicated to improving the lives of the 800,000 rare disease patients in NJ. Inclusive of individuals and organizations across the rare disease continuum, the group brings the rare disease community in New Jersey together each year to commemorate Rare Disease Day. The group’s mission is to bring recognition to the issues rare disease patients face and to work together towards better treatment options and improved access to care. Patients, supporters, advocates, legislators, biopharmaceutical and life science industry executives, healthcare professionals, academia, and individuals committed to making a difference in patients’ lives are all invited to join us.

 

About BioNJ

BioNJ is a powerful network of 400 Members representing research-based life sciences companies and other contributors to a vibrant ecosystem where Science is Supported, Companies are Created, Drugs are Developed and Patients are Paramount. Because Patients Can’t Wait®, we are dedicated to propelling this rich, innovation hub forward in New Jersey and beyond to help stimulate the discovery, development and commercialization of therapies and cures that save and improve lives and lessen the burden of illness and disease to society. As the industry’s voice in New Jersey, we fulfill our mission to help companies help patients by driving capital formation and fostering entrepreneurship, advocating for public policies that advance medical innovation, providing access to talent and education, and offering a cost-saving array of critical commercial resources.

For more information about BioNJ, please visit www.BioNJ.org.

 

About HINJ

Founded in 1997, the HealthCare Institute of New Jersey (HINJ) serves as the voice for the state’s life sciences industry. HINJ seeks to expand patient access to the most innovative biopharmaceuticals and medical devices and promote awareness of the industry’s impact on New Jersey’s quality of life and economic well-being.

For more information, visit www.hinj.org

 

About NORD

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

For more information on NORD visit rarediseases.org