Bill > H1171

This bill seeks to create a Massachusetts Rare Disease Advisory Council to coordinate statewide efforts for the study of the incidence of rare diseases within the Commonwealth and the status of the rare disease community. The council will consist of various medical professionals, representatives from state agencies and organizations involved in rare disease care, and rare disease survivors and caregivers. The council will be tasked with undertaking a statistical and qualitative examination of rare diseases, developing a profile of the social and economic burden of rare diseases, identifying best practices for rare disease care, and creating a comprehensive rare disease plan for the Commonwealth. The council will also be able to request and receive confidential medical records and information to aid in its mission, and may apply for and receive funding to support its work.

Health and Social Services

https://malegislature.gov/Bills/190/H1171