In 2022 the Colorado General Assembly passed SB22-186 to establish the Colorado Rare Disease Advisory Council to provide recommendations to the General Assembly.
The Colorado Rare Disease Advisory Council (RDAC) is composed of qualified professionals and people living with rare diseases that serves to educate medical professionals, government agencies, legislators, and the public about rare diseases as a public health issue. The RDAC gives stakeholders an opportunity to voice their experiences and give recommendations to state leaders on these critical issues.
Members
The council consists of twelve (12) voting members appointed as follows:
- The president of the senate shall appoint three (3) members, including:
- One (1) representative from academic research in the state who receives grant funding for rare disease research;
- One (1) geneticist practicing in Colorado; and
- One (1) physician licensed and practicing in Colorado with experience treating rare diseases;
- The minority leader of the senate shall appoint three (3) members, including:
- One (1) registered nurse or advanced practice registered nurse licensed and practicing in Colorado with experience treating rare diseases;
- One (1) pharmacist with experience dispensing drugs used to treat rare diseases; and
- One (1) person who has a rare disease;
- The speaker of the house of representatives shall appoint three (3) members, including:
- One (1) representative of a rare disease patient organization operating in Colorado that is not affiliated with the facilitator;
- One (1) representative of the biotechnology or pharmaceutical industry; and
- One (1) representative of a health insurer; and
- The minority leader of the house of representatives shall appoint three (3) members, including:
- One (1) person who has a rare disease;
- One (1) parent whose child or children have been diagnosed with a rare disease; and
- One (1) caregiver of a person with a rare disease.
The director of the office of health equity, created in section 25-4-2204, or the director’s designee, shall serve as an ex officio, nonvoting member of the council.