HI HCR122

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

Task Force to study rare disease incidence in Hawaii, where over 143,000 persons are affected by rare diseases with more than half specific to the Pacific region.

Task Force composition includes Director of Health, heads of relevant state agencies, two physicians with rare disease expertise (including one pediatrician), registered nurse, hospital representatives, insurance and biopharmaceutical industry representatives, scientific researcher, two parents of children with rare diseases, and two patient organization representatives.

Task Force duties include coordinating with federal agencies (NIH, FDA), collecting rare disease data, identifying treatment priorities, developing public awareness strategies, and seeking grant funding opportunities.

Task Force must meet at least three times annually, submit initial progress report by 20 days before 2017 regular session, and submit biennial reports thereafter.