There is hope for rare disease Patients in the form of an important piece of New Jersey legislation. For many of the thousands of New Jerseyans who suffer with a rare disease, a treatment or cure still remains out of reach. However, for these Patients and their caregivers, a New Jersey Rare Disease Advisory Council will soon be a reality.

 

Rare diseases are defined as those affecting fewer than 200,000 Patients. An estimated 95 percent of the more than 7,000 identified rare diseases do not have a dedicated cure. 

 

S-2682/A-4016 will create a Rare Disease Advisory Council with the goal to foster the advancement of therapies, establish best practices for health care providers, ensure health care coverage, raise awareness and educate State government to better understand barriers faced by the community and better serve Patients. This legislation had previously unanimously passed both houses of the New Jersey Legislature and late last week Governor Murphy conditionally vetoed S-2682/A-4016 and both houses of the New Jersey Legislature concurred with the Governor’s changes. The legislation now heads back to Governor Murphy for his signature. 

 

Establishing a Rare Disease Advisory Board is an important step in improving the lives of those in the rare disease community in New Jersey. BioNJ thanks Governor Murphy and the bill's primary sponsors: Senators Vin Gopal and Thomas H. Kean, Jr.; and Assembly Representatives Ronald S. Dancer, Daniel R. Benson and Anthony S. Verrelli for their support.

 

At BioNJ, we believe Patients should have access to the treatment they need when they need it. We look forward to working with the Rare Disease Advisory Council to achieve this important goal. 

Please click here for a copy of Bill S-2682/A-4016.

Please click here for the text of Governor Murphy’s conditional veto.