Trenton, NJ - The New Jersey Rare Disease Alliance is an alliance of individuals and organizations dedicated to improving the lives of the 800,000 NJ rare disease patients through awareness, advocacy & research. To bring recognition to the issues rare disease patients face and the role of government and industry in addressing the needs of rare disease patients, the New Jersey Rare Disease Alliance will host events at the New Jersey State House on March 16 in Room 14 of the Annex Building.
The event is supported by NORD (National Organization for Rare Disorders) and BioNJ and is planned to coincide with Rare Disease Day events planned all over the world. The theme of Rare Disease Day this year is “Day by Day, Hand in Hand.” The New Jersey event will include an opportunity to network with others in the rare disease community from 9:30-4:00. An hour-long program at 12:00 noon will focus on the “Rare Disease Paradox: Patients are Common, Treatments are Not."
The program will be moderated by rare disease patient advocate Bill Cummings. Confirmed speakers include Assemblyman Herb Conaway, Chair of the Health and Senior Services Committee of the New Jersey Legislative Assembly, Diane Dorman, Vice President of Public Policy at the National Organization of Rare Disorders, Dr. Charles Stanley, preeminent endocrinologist, Children’s Hospital of Philadelphia, Bill O’Donnell, Vice President of Public Affairs and Communications at BioNJ, and parents of a child with a rare disease. Leaders from the Rare Disease community will share stories of what it is like to live with a rare disease in 2015, the great unmet need that exists in this community, the importance of advocacy on the federal and state level, and the promise of new treatments and increased access to care. The New Jersey Rare Disease Alliance is also organizing “Facetime with Your Legislator.” Room 14 will be available on March 16 before and after the noon event for patients and families to meet with the legislators in their home districts.
In addition, attendees will have the opportunity to tell their stories and be videotaped by Rare Disease Report.
Their weekly newsletter goes out to 50,000 clinicians, patients, advocates, investors, and scientists who are interested in rare diseases. Continental breakfast and lunch will be served.
Registration for the event: https://www.eventbrite.com/e/2015-rare-disease-day-event-with-nj-legislators-tickets- 15675294227 For more information, please contact: Julie Raskin Cell: 973-715-3360 [email protected] www.njrarediseasealliance.org
The program will be moderated by rare disease patient advocate Bill Cummings. Confirmed speakers include Assemblyman Herb Conaway, Chair of the Health and Senior Services Committee of the New Jersey Legislative Assembly, Diane Dorman, Vice President of Public Policy at the National Organization of Rare Disorders, Dr. Charles Stanley, preeminent endocrinologist, Children’s Hospital of Philadelphia, Bill O’Donnell, Vice President of Public Affairs and Communications at BioNJ, and parents of a child with a rare disease. Leaders from the Rare Disease community will share stories of what it is like to live with a rare disease in 2015, the great unmet need that exists in this community, the importance of advocacy on the federal and state level, and the promise of new treatments and increased access to care. The New Jersey Rare Disease Alliance is also organizing “Facetime with Your Legislator.” Room 14 will be available on March 16 before and after the noon event for patients and families to meet with the legislators in their home districts.
In addition, attendees will have the opportunity to tell their stories and be videotaped by Rare Disease Report.
Their weekly newsletter goes out to 50,000 clinicians, patients, advocates, investors, and scientists who are interested in rare diseases. Continental breakfast and lunch will be served.
Registration for the event: https://www.eventbrite.com/e/2015-rare-disease-day-event-with-nj-legislators-tickets- 15675294227 For more information, please contact: Julie Raskin Cell: 973-715-3360 [email protected] www.njrarediseasealliance.org
