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 and
Month 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 a.m. – 4:00 p.m. 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 Assembly, Diane Dorman, Vice President of Public Policy at
the National Organization of Rare Disorders, Dr. Charles Stanley, pediatric
endocrinologist and rare disease researcher, Children’s Hospital of Philadelphia, Bill
O’Donnell, Vice President of Public Affairs and Communications 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.
Leaders from the Rare Disease community will share what it is like to live with a rare
disease in 2015, the great unmet need that exists, 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.”
This is an opportunity for rare disease community members to invite legislators in their
home districts to Room 14 on March 16 before and after the noon event.
In addition, attendees will have the opportunity to tell their stories and be videotaped by
Rare Disease Report, the news media outlet specializing in rare disease coverage. 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-
For more information, please contact:
Julie Raskin
Cell: 973-715-3360
julie@njrarediseasealliance.org
www.njrarediseasealliance.org
