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 disability; and
WHEREAS, CDGs are severely underdiagnosed and misdiagnosed, with only approximately 1,500 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 goal is to raise awareness and increase the accurate and timely diagnosis of this rare
group of inherited metabolic disorders, known as CDG;
NOW, THEREFORE, I, ROY COOPER, Governor of the State of North Carolina, do hereby proclaim May 16, 2022, as “CONGENITAL DISORDERS OF GLYCOSYLATION AWARENESS DAY” in North Carolina, and commend its observance to all citizens.