In an effort to better understand the unique issues that affect New Jersey residents living with rare diseases, Assemblymen Daniel Benson and Anthony Verrelli sponsor legislation that would establish a New Jersey Rare Disease Advisory Council.
Rare diseases are defined as those affecting fewer than 20,000 people. An estimated 25 to 30 million Americans are living with one or more of 7,000 different rare diseases – many of which are genetic.
The goal of an advisory council comprised of qualified professionals and individuals with rare diseases, as established by the bill (A-4016), would be to study the link between COVID-19 and rare diseases as well as learn about any issues individuals may have with accessing treatment and services. The council would advise government officials and health care providers, and raise awareness about these rare diseases.
Upon the measure being advanced by the Assembly Health Committee on Wednesday, Assemblymen Benson (D-Mercer, Middlesex) and Verrelli (D-Mercer, Hunterdon) issued the following joint statement:
“Due to the nature of rare diseases, many people living with them unfortunately face greater barriers to diagnosis and treatment than those with more common diseases. The struggle to find medical practitioners who understand their disease and how it affects other areas of their life – including in situations where they become ill with something as dangerous as COVID-19 – can have a real impact on their overall health and well-being.
“An advisory council comprised of experts and the very people living with these diseases is a great way to help raise awareness, provide best practices to doctors and advise public health policy on behalf of all New Jersey residents with rare diseases.”
The bipartisan bill, also sponsored by Republican Assemblyman Ronald Dancer, now heads to the Assembly Speaker for further consideration.