TRENTON, N.J. – Assemblyman Ron Dancer’s legislation creating a 20-member advisory council to study issues facing New Jersey residents diagnosed with rare diseases was signed into law today.
The law will help the state government better understand barriers faced by the community and better serve patients, especially in the time of a pandemic.
“I am pleased the governor saw fit to support this measure. Those diagnosed with a rare disease shouldn’t have to jump through hoops to receive proper medical treatment or a diagnosis,” said Dancer (R-Ocean). “With the creation of this advisory council, we will develop policy recommendations and best practices to share with state decision-makers that can improve the lives of those in the rare disease community.”
The new law will ensure that the rare disease patient community is represented and supported on important issues like health care access, coverage and the advancement of much needed therapies, said Nadia Bodkin, the founder of the Rare Advocacy Movement.
“While a number of other states have established rare disease advisory councils, Dancer’s bill is unique because a lot of effort has been put into designing and tailoring this bill to specifically serve the needs of the New Jersey rare disease landscape,” Bodkin said.
Rare diseases are defined as those that affect fewer than 20,000 people. There are 7,000 rare diseases affecting approximately 25 to 30 million Americans. Those diagnosed often face a wide range of challenges, including misdiagnosis and lack of effective therapies.