WHEREAS, congenital disorders of glycosylation (CDG) are a group of rare metabolic disorders that affect normal organ development and the neurological system leaving children, adolescents, and adults impaired with significant physical and developmental disabilities; and
WHEREAS, CDG is severely underdiagnosed and misdiagnosed, with only approximately 1,000 cases diagnosed with CDG globally, and only 200 cases currently reported in the United States; and
WHEREAS, lack of public awareness and visibility of CDG contributes to underdiagnosis and difficulties in accessing specialized services and proper rehabilitation and support; and
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 goals of Congenital Disorders of Glycosylation Awareness Day are to educate the public and promote accurate and timely diagnosis of these rare genetic, metabolic disorders;
NOW, THEREFORE, I, ROY COOPER, Governor of the State of North Carolina, do hereby proclaim May 16, 2021, as “CONGENITAL DISORDERS OF GLYCOSYLATION AWARENESS DAY” in North Carolina, and commend its observance to all citizens.