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

WHEREAS, XLH affects approximately one in 20,000 newborns according to the National Institutes of Health (NIH); and

WHEREAS, the disease causes serious and debilitating symptoms that have a significant impact on the lives of those who suffer from XLH as well as their families; and

WHEREAS, patients affected by XLH and their families often encounter a variety of problems outside the illness itself, including 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;

NOW, THEREFORE, I, STEVE SISOLAK, GOVERNOR OF THE STATE OF NEVADA, do hereby proclaim June 23, 2021, as

XLH AWARENESS DAY IN NEVADA