CT HB06580

Establishes an Advisory Council on Rare Diseases to advise the Commissioner of Public Health on research, diagnosis, treatment, and education related to rare diseases, effective July 1, 2015.

Council membership includes five physicians in specified specialties (neurology, cardiology, orthopedics, internal medicine, emergency medicine), a medical researcher, a nurse, hospital administrators, a rare disease survivor, a pediatric caregiver, and a National Organization for Rare Disorders representative.

Chairpersons of the joint standing committee on public health serve as members; the Commissioner of Public Health serves as ex-officio nonvoting member.

Members appointed under subsection (b) serve three-year terms with a maximum of two consecutive terms; all appointments must be made within 30 days of the effective date.

Council must submit annual reports by January 1, 2016 and thereafter with recommendations on practice guidelines, clinical education, educator outreach, and development of a volunteer expert network for rare disease diagnosis and treatment.