Bill > H1977

This bill establishes a Massachusetts Rare Disease Advisory Council within the Department of Public Health to coordinate statewide efforts for studying rare diseases, which are defined as conditions affecting fewer than 200,000 people in the United States, designated as "orphan" diseases for research, or significantly underdiagnosed due to lack of information. The council will be composed of various medical professionals, hospital administrators, patient and caregiver representatives, and public health officials, all serving three-year terms without compensation but with reimbursement for expenses. The council's primary role is to advise the governor, legislature, and the Commissioner of Public Health on the incidence and status of rare diseases in the commonwealth, undertaking research on their social and economic impact, identifying prevention and treatment strategies, determining the impact of delayed treatment, studying the economic burden of early intervention, and developing best practices for public and provider education. It will also research methods for collecting rare disease data, identify best practices from other states, seek funding, develop a registry of rare diseases, and create a comprehensive rare disease plan for the commonwealth, reporting its findings and progress annually. The council will have the authority to request and receive confidential medical records, provided they do not contain individually identifiable patient information, and can apply for and receive funds to support its work. The first meeting of the council must occur within 180 days of the bill's effective date.