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 firstname.lastname@example.org www.njrarediseasealliance.org