Bill > H4268

This bill aims to create a Massachusetts Rare Disease Advisory Council. The council will consist of 28 members, including state officials, healthcare providers, patient advocates, and other stakeholders. The council's key responsibilities include: (1) coordinating rare disease research and treatment efforts, (2) analyzing the prevalence and burden of rare diseases in the state, (3) developing strategies to improve rare disease recognition and treatment, (4) evaluating the current rare disease care system, and (5) creating a comprehensive rare disease plan for the state. The bill also requires the council to provide annual reports on its activities and progress. The bill also directs the governor or secretary of health to research and report on potential funding sources for the council's formation and operation, and requires the council to provide a preliminary report on its resource needs within 180 days of the bill's effective date.

Budget and Finance, Health and Social Services

Joint Committee on Public Health (J)

https://malegislature.gov/Bills/191/H4268