AN ACT Relating to creating an advisory council on rare diseases; adding new sections to chapter 43.70 RCW; and creating a new section.

(1) Rare diseases are those that affect fewer than 200,000 people in the United States. There are over 7,000 rare diseases affecting approximately 30,000,000 Americans and 50 percent of those are children;

(2) The exact cause for many rare diseases remains unknown. However, 80 percent of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes which can be passed down from generation to generation; and

(3) A person suffering with a rare disease faces a wide range of challenges, including delays in obtaining a diagnosis, being misdiagnosed, shortages of medical specialists who can provide treatment for rare diseases, and a lack of therapies and medications that are used by doctors to treat rare diseases.

(1) An advisory council on rare diseases is established within the University of Washington school of medicine to advise the secretary of health on research, diagnosis, treatment, and education related to rare diseases.

(a) Four clinicians and researchers specializing in rare diseases, including at least one representative from a pediatric hospital, at least one representative from a hospital or academic research institution east of the crest of the Cascade mountains, and at least one representative from a hospital or academic research institution west of the crest of the Cascade mountains, from the following professions:

(i) A physician licensed and practicing in the state with experience researching, diagnosing, or treating rare diseases;

(ii) A registered nurse, advanced practice registered nurse, genetic counselor, or social worker licensed and practicing in the state with experience with patients with rare diseases;

(iii) A medical researcher with experience conducting research concerning rare diseases; and

(iv) A representative from an academic research institution in this state that receives any grant funding for rare disease research;

(c) The director of the department of health of the children and youth with special health care needs program, or their designee;

(e) Two representatives from the life sciences industry that focus on developing therapeutic products for rare disease patients, research efforts related to those endeavors, or have a demonstrable understanding of the path to commercialization of such products.

(3) Members must be selected to ensure representation from both east and west of the crest of the Cascade mountains.

(4) Voting members shall be appointed to serve a three-year term. No member may serve more than three consecutive terms. A vacancy on the council must be filled in the same manner as the original appointment. An individual appointed to fill a vacancy created other than by expiration of a term must be appointed for the unexpired term of the member whom the individual is to succeed in the same manner as the original appointment.

(5) Members of the council may be reimbursed for travel expenses as provided in RCW 43.03.050 and 43.03.060.

(6) Subject to amounts appropriated for this specific purpose, the University of Washington shall provide staff support to the council including physician leadership.

(7) The council shall self-select a chair. The chair shall convene the first meeting of the council no later than six months after the effective date of this section. Following the first meeting, the council shall meet upon the call of the chair or upon the request of a majority of the members, but no less than once per quarter after the first meeting.

(8) A majority of the members shall constitute a quorum. A majority vote of a quorum shall be required for any official action of the council.

(9) For purposes of this section, "rare disease" means a disease that affects fewer than 200,000 people in the United States.

(a) Act as the advisory body on rare diseases to the secretary of health on research, diagnosis, treatment, and education related to rare diseases;

(b) Advise on and coordinate efforts for the study of incidence and prevalence of rare diseases in the state and the status of the rare disease community, including examination of:

(i) Issues regarding quality of care outcomes and cost effectiveness of earlier diagnoses and treatment of rare diseases; and

(ii) Access to treatment and services available to persons with rare diseases in the state;

(c) Identify effective research-based strategies that have been developed to help diagnose, treat, and prevent rare diseases;

(d) Make recommendations on how to better educate and inform medical providers, schools, and public health districts around the diagnosis, treatment, and access to care for persons living with a rare disease, including support for their families and caregivers;

(e) Develop effective strategies to raise public awareness of rare diseases in the state; and

(f) Make recommendations on establishing a website for persons living with a rare disease, their families, and their caregivers, or those seeking diagnosis, to access a centralized, publicly accessible repository of information and resources available to patients in Washington state.

(2) Beginning December 1, 2026, and every biennium thereafter, and in accordance with RCW 43.01.036, the council shall submit a report to the governor and the legislature detailing the work of the council from the preceding biennium, identifying opportunities to support programs that directly impact the lives of patients with rare diseases, and providing any recommendations for statutory changes to the structure and duties of the council.

(3) The council shall serve in an advisory role only and may not supersede the authority of local health jurisdictions when responding to an outbreak of a communicable rare disease.

(4) For purposes of this section, "rare disease" means a disease that affects fewer than 200,000 people in the United States.