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HR-45 (2021-2022)

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HR45:v99#DOCUMENT


CALIFORNIA LEGISLATURE— 2021–2022 REGULAR SESSION

House Resolution
No. 45


Introduced by Assembly Member Levine

May 12, 2021


Relative to X-Linked Hypophosphatemia awareness.


LEGISLATIVE COUNSEL'S DIGEST


HR 45, as introduced, Levine.

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 debilitation 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, 2021, as X-Linked Hypophosphatemia Awareness Day and June 2021 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.