XLH Awareness Day

By virtue of the authority vested by the Constitution of Virginia in the Governor of the Commonwealth of Virginia, there is hereby officially recognized:

XLH Awareness Day

WHEREAS, X-Linked Hypophosphatemia (XLH) is a whole-body, whole-life rare genetic disorder that affects an individual at any age beginning at birth and through childhood, adulthood, and advanced age; and

WHEREAS, XLH is characterized by low levels of the mineral phosphorus in the blood due to abnormal processing by the kidneys and can affect a patient’s bones, joints, teeth, muscles, hearing, and nervous system; 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 debilitative symptoms that have a major impact on the lives of those people who suffer from XLH and their families; and

WHEREAS, XLH symptoms are varied including bone and joint pain, fatigue, and decreased mobility making daily activities challenging and accommodations may be required to perform school and work functions; and

WHEREAS, patients and families affected by XLH often encounter a variety of problems outside the illness itself, such as difficulty in obtaining an accurate and timely diagnoses, effective treatment options, and handling the cost of 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, Glenn Youngkin, do hereby recognize June 23, 2024, as XLH AWARENESS DAY in the COMMONWEALTH OF VIRGINIA, and I call this observance to the attention of all our citizens.

Governor of Virginia

Proclamations