Synopsis As Introduced Creates the Rare Disease Commission Act. Provides for the creation of the Rare Disease Commission. Defines terms. Provides that initial appointments shall be made by February 1, 2017. Provides required criteria and considerations for appointees and nominations to the Commission. Includes provisions regarding the terms, vacancies, and compensation for the Commission's membership. Requires that the Commission meet at least quarterly and submit an annual report due no later than December 31 of every year to the General Assembly. Provides that the Department of Public Health shall provide administrative and other support to the Commission. Effective January 1, 2017.
Senate Floor Amendment No. 2 Removes provisions concerning compensation for members of the Rare Disease Commission. Removes language providing that members shall be appointed to staggered terms. Provides that the Rare Disease Commission shall coordinate with the Genetic and Metabolic Diseases Advisory Committee for the portion of the Commission's annual report concerning the screening of newborn infants. Provides that the Act shall be repealed on January 1, 2020. Makes a conforming change.