WHEREAS, X-Linked Hypophosphatemia (XLH) is a whole-body, whole-life rare genetic disorder that affects the person since birth, childhood, adulthood and advanced age affecting the patient's bone, joints, dental, hearing, muscle and or nerve systems; and

WHEREAS, XLH affects about one in 20,000 newborns according to the National Institutes of Health (NIH); 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 the illness itself, such difficulty in obtaining accurate and timely diagnoses, finding effective treatment options, and or 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 found 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 state of Nevada is committed to promoting the health and welfare of all residents of the Silver State and supports efforts to raise awareness of the disorder and embrace hope for a cure.

NOW, THEREFORE, I, STEVE SISOLAK, GOVERNOR OF THE STATE OF NEVADA, do hereby proclaim June 12, 2022, as

XLH AWARENESS DAY IN NEVADA