RAMSEY, N.J.--(BUSINESS WIRE)--The New Jersey Rare Disease Alliance, a newly formed organization dedicated to improving the lives of the 800,000 rare disease patients in NJ, is hosting their first event at the New Jersey State House on March 16 in Room 14 of the Annex Building. Supported by BioNJ and NORD (National Organization for Rare Disorders), the event coincides with the Rare Disease Day and Month events planned all over the world.
An hour-long program at 12:00 noon will focus on the “Rare Disease Paradox: Patients are Common, Treatments are Not” and will be moderated by rare disease patient advocate Bill Cummings. Speakers include Assemblyman Herb Conaway, Chair of the Health and Senior Services Committee of the New Jersey Assembly; Diane Dorman, Vice President of Public Policy at the National Organization for Rare Disorders (NORD); Dr. Charles Stanley, pediatric endocrinologist and rare disease researcher at the Children’s Hospital of Philadelphia (CHOP); Rebecca Perkins, Vice President, Government Affairs at BioNJ; an executive from PTC Therapeutics, a global biopharmaceutical company focused on the treatment of rare disorders, infectious diseases and oncology; and parents of a child with a rare disease.
Opportunities to meet others in the rare disease community will begin at 9:30 A.M. and will continue after the panel discussion. The event will bring together a diverse group of people and organizations including patients, supporters, advocates, legislators, biopharmaceutical and life science industry executives, healthcare professionals, academia, and individuals who are committed to making a difference in the lives of rare disease patients. Attendees will hear what it is like to live with a rare disease in 2015, the pervasive unmet needs that exist, the importance of advocacy on the federal and state level, and the promise of new treatments and increased access to care.
Representatives from the Rare Disease Report, a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community, will be on-premise to capture the stories of anyone who would like to be videotaped. In addition, attendees will have an opportunity to meet with legislators and have their voices heard.
Registration for the event can be accessed through this link:
About The New Jersey Rare Disease Alliance
The New Jersey Rare Disease Alliance is an organization dedicated to improving the lives of the 800,000 rare disease patients in NJ. Comprised 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. For more information, visit our website at www.njrarediseasealliance.org or contact us at email@example.com. Together we are stronger.
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.
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