Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of New Jersey.
A training will take place at the New Jersey Business and Industry Association (NJBIA) from 10:00 a.m. – 11:30 a.m. The training will be led by experts at BioNJ and HINJ. Following the training session, patient advocates will walk to the State House to meet with legislators.
Please fill out the form here to attend the New Jersey State House Event.