Governor Proclaims XLH Awareness Day 2024

XLH AWARENESS DAY

2024

BY THE GOVERNOR OF THE STATE OF NORTH CAROLINA

A PROCLAMATION

WHEREAS, X-Linked Hypophosphatemia (XLH) is a whole-body, whole-life rare genetic disorder that can affect a patient’s bones, joints, teeth, hearing, muscles, and nervous system; 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 can have a major impact on the lives of people who suffer from XLH and their families; and

WHEREAS, affected patients and their families often encounter a variety of problems outside the illness itself, such as difficulty in obtaining accurate and timely diagnoses, finding effective treatment options, and/or being able to afford the appropriate treatment; and

WHEREAS, while XLH has no cure, dedicated researchers around the world continue their efforts to understand how genetic mutations work with the hope that a cure may someday be found; and

WHEREAS, the State of North Carolina joins X-Linked Hypophosphatemia patients, their families, and advocacy organizations, such as the XLH network, in raising awareness of this disorder, promoting educational programs for new parents and healthcare providers, and embracing hope for a cure;

NOW, THEREFORE, I, ROY COOPER, Governor of the State of North Carolina, do hereby proclaim June 23, 2024, as “XLH AWARENESS DAY” in North Carolina, and commend its observance to all citizens.

________________________________________

Roy Cooper

Governor

IN WITNESS WHEREOF, I have hereunto set my hand and affixed the Great Seal of the State of North Carolina at the Capitol in Raleigh this fourteenth day of June in the year of our Lord two thousand and twenty-four and of the Independence of the United States of America the two hundred and forty-eighth.