TRENTON, N.J. – Residents afflicted with rare diseases can look forward to better coordinated and more effective attention from experts and government leaders under legislation sponsored by Assemblyman Ron Dancer and advanced by the full Assembly today.
Dancer’s bill (A4016/S2682) establishes a 20-member advisory council to undertake a comprehensive study of issues facing those diagnosed with a rare disease. It would help the state government better understand barriers faced by the community and better serve patients.
“Someone who is 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 an 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.”
Nadia Bodkin, the founder of the Rare Advocacy Movement, pointed out Dancer’s bill would make New Jersey a leader among the states in serving the needs of the rare disease community.
“Now more than ever, the New Jersey rare disease community needs to have their voices heard,” said Bodkin. “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.”
She said that it would 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.
Given the detrimental impact the coronavirus pandemic is having, the council may be the most qualified to research its effects on people with rare diseases and potentially highlight much needed solutions.
“The coronavirus pandemic has shined a light on the need to conduct a thorough study of current treatment plans and legislative policies that affect the treatment of rare diseases,” concluded Dancer. “This council would help state departments and agencies assist those affected by a rare disease with critical and possibly life-saving information.”
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.