Region – House Minority Leader Bradley H. Jones, Jr. (R-North Reading) has appointed State Rep. Hannah Kane (R-Shrewsbury) to serve as his designee on the newly-established Rare Disease Advisory Council.
During the 2019-2020 legislative session, Kane was the lead co-sponsor, along with Representative Joseph McKenna (R-Webster), of legislation calling for the creation of the Council, which will advise the Governor, the Legislature and the Department of Public Health on the incidence of rare disease in Massachusetts. She also sponsored an amendment based on the legislation she filed that was adopted as part of an omnibus health care reform bill that was signed into law on January 1.
“Hannah has been at the forefront of this issue and has spearheaded the effort to create a permanent state entity devoted to addressing the needs of the rare disease community in Massachusetts,” said Jones. “I am confident she will help make the Council an effective voice for improving access to research, diagnosis and treatment for those individuals who are living with a rare disease.”
The new law defines rare diseases as any condition that “affects fewer than 200,000 people in the United States, has status as an orphan disease for research purposes, or is known to be substantially under diagnosed and unrecognized as a result of lack of adequate diagnostic and research information.”
The 29-member Council will be chaired by Dr. Monica Bharel, the state’s Commissioner of Public Health. It will be responsible for developing and maintaining a comprehensive rare disease plan for the commonwealth, and will be required to file an annual report by December 31.
Kane represents the Eleventh Worcester District, which is comprised of the town of Shrewsbury and precincts 4 and 5 in Westborough.