Governor Proclaims Congenital Disorders of Glycosylation Awareness Day 2024

CONGENITAL DISORDERS OF GLYCOSYLATION AWARENESS DAY

2024

BY THE GOVERNOR OF THE STATE OF NORTH CAROLINA

A PROCLAMATION

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, these disorders are severely underdiagnosed and misdiagnosed, with only approximately 1,800 cases diagnosed as CDG globally, and only 350 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 State of North Carolina encourages residents and health care providers across the state to raise awareness and increase the accurate and timely diagnosis of this rare group of inherited metabolic disorders;

NOW, THEREFORE, I, ROY COOPER, Governor of the State of North Carolina, do hereby proclaim May 16, 2024, as “CONGENITAL DISORDERS OF GLYCOSYLATION AWARENESS DAY” in North Carolina, and commend its observance to all citizens.

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Roy Cooper

Governor

IN WITNESS WHEREOF, I have hereunto set my hand and affixed the Great Seal of the State of North Carolina at the Capitol in Raleigh this ninth day of May in the year of our Lord two thousand and twenty-four and of the Independence of the United States of America the two hundred and forty-eighth.