WHEREAS, the State of Nevada is committed to promoting the health and wellness of all citizens of this state, and supports efforts to expand public awareness regarding treatment and prevention of harmful disorders and disabilities; and
WHEREAS, Congenital Disorders of Glycosylation (CDG) are a group of rare metabolic disorders thee d e c t normal organ development and the neurological system, leaving children, adolescents and adults impaired with significant physical and developmental disability; and
WHEREAS, a lack of public awareness and visibility associated with CDG contributes to under-diagnosis and difficulties in accessing specialized services and proper rehabilitation and support for those living with this condition.
WHEREAS, early diagnosis of CDG is important to ensure timely management of clinical complications, genetic counseling, and when available, treatment and therapeutic remedies; and
WHEREAS, the State of Nevada supports efforts to raise awareness and increase the accurate and timely diagnosis of this rare group of inherited metabolic disorders, known as CDG, with continued commitment to promoting access to care and supportive services for Nevada families with health needs related to CDG and other metabolic disorders;
NOW, THEREFORE, I, BRIAN SANDOVAL, GOVERNOR OF THE STATE OF NEVADA, do hereby proclaim May 16, 2016 as