NJRareDiseaseAlliance

NEWS RELEASE
Media Contact:
Ellynn Decter Szoke
973-761-4403
ellynn@njrarediseasealliance.org




FOR IMMEDIATE RELEASE


            New Jersey Rare Disease Alliance Commemorates Global Rare Disease Day
                           Hosts February 29 Event on Building Relationships and Raising Awareness

Ramsey, NJ (February 19, 2016) - The New Jersey Rare Disease Alliance, - dedicated to improving the lives of the more than 800,000 rare disease patients in New Jersey - is hosting an event on Monday, February 29 to observe global Rare Disease Day, at the New Jersey Business and Industry Association (NJBIA), 10 West Lafayette Street, Trenton starting at 10:00 AM.

Sponsored in conjunction with BioNJ, the HealthCare Institute of NJ (HINJ) and the National Organization for Rare Diseases (NORD), training will be provided on how to more effectively build relationships with legislators and other policymakers on behalf of rare disease patients. 

Following a NORD-sponsored breakfast at 10:00 a.m. there will be an hour of training from 10:30-11:30 a.m. by state legislative experts from HINJ and BioNJ. Senator Diane Allen (Burlington) will present a ceremonial resolution commemorating Rare Disease Day 2016 in New Jersey. The session will conclude with an original song performed by Janna Pelle, a talented young songwriter and performer who was inspired by her father’s courageous battle with MDS, a rare bone marrow disorder. 

The day’s activities will continue with patients and advocates meeting with legislators at the State House.

"While there has been great progress in the rare disease community, there is still much to be done. We are supporting this year’s global Rare Disease Day theme, “join us in making the voices of rare diseases heard” by helping to build a bridge between patients and policymakers,” commented Julie Raskin, co-founder of the New Jersey Rare Disease Alliance. "We are looking forward to patients and their advocates joining us for this vital event."


About The New Jersey Rare Disease Alliance 

The New Jersey Rare Disease Alliance is 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’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. 

To attend the February 29 event in Trenton, please send an email to info@njrarediseasealliance.org with the names of the people in your party attending, and any questions you may have. Together we are stronger. For more information about NJRDA, please visit www.njrarediseasealliance.org

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





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