HI HR76

Requests the Department of Health to convene the Hawaii Rare Disease Task Force to coordinate statewide efforts on rare disease research, diagnosis, and treatment.

Task Force shall consist of the Director of Health, other relevant state agency heads, and public members including physicians, nurses, hospital representatives, insurance and biopharmaceutical industry representatives, rare disease researchers, parents of children with rare diseases, and patient organization representatives.

Task Force directed to study rare disease incidence in Hawaii, advise state agencies and Legislature, coordinate with federal agencies (NIH, FDA), collect patient data, develop policy recommendations, and identify funding opportunities for rare disease programs.

Task Force required to meet at least three times annually, select leadership, and submit initial progress report to Legislature 20 days before the 2017 Regular Session, then submit biennial reports thereafter.

Department of Health requested to research existing funding sources and provide staff services to support Task Force operations.