TRENTON, N.J. – Advocates from the National Organization of Rare Disorders and Rare Advocacy Movement are organizing to support legislation sponsored by Assemblyman Ron Dancer.
Dancer’s bill (A4016) would establish a 30-member advisory council that would examine the issues facing those diagnosed with a rare disease through a comprehensive study. It would help state government better understand the 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,” 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.”
Julie Raskin, an ambassador with the New Jersey Rare Action Network, said that passing Dancer’s bill would do a lot to support patients with rare diseases.
“I’ve studied bills and the work of councils in a number of other states,” said Raskin. “This bill will allow us to create a superb council because of the excellent rare disease stakeholders in the state, including the patients, superb institutions of higher education, cutting edge biopharmaceutical industry and caring lawmakers and government experts.”
Nadia Bodkin, the founder of the Rare Advocacy Movement, pointed out Dancer’s bill would make New Jersey a leader among the states to serve 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 impact 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 impact 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.”
Between 25 to 30 million Americans suffer from a rare disease. Those diagnosed often face a wide range of challenges, including misdiagnosis and lack of effective therapies.