Bill Text: CA AR119 | 2021-2022 | Regular Session | Introduced
Bill Title: Relative to X-Linked Hypophosphatemia awareness.
Sponsorship: Broadly Bipartisan Bill
Status: (Passed) 2022-06-29 - Read. Adopted. (Ayes 78. Noes 0.). [AR119 Detail]
Download: California-2021-AR119-Introduced.html
CALIFORNIA LEGISLATURE—
2021–2022 REGULAR SESSION
House Resolution
No. 119
| Introduced by Assembly Member Levine |
June 16, 2022 |
Relative to X-Linked Hypophosphatemia awareness.
LEGISLATIVE COUNSEL'S DIGEST
HR 119, as introduced, Levine.
Digest Key
Bill Text
WHEREAS, X-Linked Hypophosphatemia (XLH) is a whole-body, whole-life rare genetic disorder that affects the person from birth through childhood, adulthood, and advanced age, affecting the patient’s muscular, skeletal, auditory, and nervous systems; and
WHEREAS, XLH affects about one in 20,000 newborns, according to the National Institutes of Health; and
WHEREAS, The effects of the disease cause serious and debilitating symptoms that have a major impact on the lives of those people who suffer from XLH and their families; and
WHEREAS, Patients affected by XLH and their families often encounter a variety of problems outside of the illness itself, such as difficulty in obtaining accurate and timely diagnoses, finding effective treatment options, and being able to afford the appropriate treatment; and
WHEREAS, XLH is not a curable disease; however, dedicated researchers around the world continue their efforts to understand how genetic mutations work with the hope that a cure will be developed one day; and
WHEREAS, Educational programs must be public and constant so that new parents and health providers can be exposed to the most up-to-date information; and
WHEREAS, The XLH Network, Inc., (www.xlhnetwork.org) is a nonprofit organization in support of caregivers and patients affected by XLH; now, therefore, be it
Resolved by the Assembly of the State of California, That the Assembly hereby proclaims June 23, 2022, as X-Linked Hypophosphatemia Awareness Day and June 2022 as XLH Awareness Month in California; and be it further
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.
