WHEREAS, X-Linked Hypophosphatemia (XLH) is a rare inherited genetic disorder that is characterized by excessive loss of phosphate, that can lead to serious and debilitating effects on patients’ bones, teeth, joints, muscles, hearing, and nervous system; and
WHEREAS, XLH affects an estimated one in 20,000 newborns worldwide according to the National Institutes of Health (NIH); 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 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 of finding a cure; 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, 2021, as “XLH AWARENESS MONTH” and June 23, 2021, as “XLH AWARENESS DAY” in North Carolina, and commend its observance to all citizens.