On Monday February 29 th, Candace Moose, Co-Founder of the Myocarditis Foundation, attended New Jersey Rare Disease Day. Rare Disease Week is a global event sponsored in the US by the National Organization for Rare Diseases. It is designed to bring awareness of the unique needs of victims of rare diseases and to advocate for legislation affecting of our diseases. Candace met with Senator Ronald Riser who serves on the Health and Human Services Committee, in his NJ State Capitol office in Trenton, to make him aware of myocarditis, the Myocarditis Foundation, and how this disease can impact the lives of NJ residents. The NJ Rare Disease group asked for Senator Riser’s support for Assembly Bill #2337 which requires health insurers to limit chronic rare disease patients’ out of pocket costs for certain prescription drugs. Senator Riser was receptive to supporting this bill when it reaches the Senate floor.
Candace Moose and NJ Senator Ronald Riser