By Bob Katzen
The House approved and sent to the Senate a bill designating the last day of February as rare disease day in Massachusetts in order to “increase public awareness of rare diseases which affect millions of Americans resulting in special challenges encountered by patients and their families as well as the impact upon medical professionals, researchers, educators and others who serve the rare disease community.”
Supporters said the legislation will call attention to the public health issues associated with rare diseases. They noted that research can lead to an increased understanding of diseases, the development of innovative treatments and in some cases, a cure. Patients and families living with rare diseases face many challenges such as finding accessible medical care and affordable treatments.
“I filed this bill in support of constituents in my district and all people who are currently suffering with a rare disease,” said sponsor Rep. Brian Ashe (D-Longmeadow). “Raising public awareness is critical to increasing funding for research, providing patients with additional resources, and hopefully resulting in a cure. I am thrilled this legislation has been engrossed by the House and I am hopeful the Senate will do the same and the governor will sign it into law.”