WHEREAS, X-Linked Hypophosphatemia (XLH) is a whole-body, whole-life rare genetic disorder that affects the person from birth through childhood, adulthood, and advanced age, affecting the patient’s muscular, skeletal, auditory, and nervous systems; 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 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 of 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, 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 developed 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 XLH Network, Inc., (www.xlhnetwork.org) is a nonprofit organization in support of caregivers and patients affected by XLH; now, therefore, be it