Pennsylvania Statutes Title 35 P.S. Health and Safety § 6264. Purpose and duties

(1) Coordinate Statewide efforts for the study of the incidence and prevalence of rare diseases within this Commonwealth and the status of the rare disease community.

(2) Act as the advisory body on rare diseases to the General Assembly and to all relevant State and private agencies that provide services to, or are charged with the care of, individuals with rare diseases.

(3) Coordinate the performance of the advisory council's duties with those of other rare disease advisory bodies and community-based organizations and other public and private organizations within this Commonwealth for the purpose of ensuring greater cooperation between the entities within this Commonwealth and Federal agencies regarding the research, diagnosis and treatment of rare diseases. For purposes of this paragraph, Federal agencies may include, but are not limited to, the National Institutes of Health and the Food and Drug Administration. The coordination shall require, when appropriate:

(1) Research and determine the most appropriate method to collect rare disease data, and information concerning individuals with rare diseases, as the advisory council deems necessary and appropriate to conduct comprehensive surveys of rare diseases diagnosed in this Commonwealth, subject to all applicable privacy laws and protections.

(2) Ensure that the duties described in subsection (a)(1) are carried out in a manner that is coordinated and interoperable with other similar research being conducted at the Federal and State level.

(3) Research and identify priorities relating to the quality and cost effectiveness of and access to treatment and other services provided to individuals with rare diseases in this Commonwealth and develop policy recommendations on those issues.

(4) Identify best practices in other states and at the national level for rare disease management, monitoring and surveillance, education, detection, diagnosis, information and care to improve these functions and capabilities relative to rare diseases within this Commonwealth.

(5) Develop effective strategies to raise public awareness of rare diseases within this Commonwealth.

(6) Coordinate the development of a task force, comprised of members of the advisory council and other individuals as may be necessary and appropriate to facilitate the development and publication of the report specified in section 6(b). 1