Congenital Disorders of Glycosylation Awareness Day

By the Governor of Alabama
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, CDG is severely under-diagnosed and misdiagnosed with only approximately 1,000 cases diagnosed with CDG globally, and only 150 cases currently reported in the United States; and
WHEREAS, lack of public awareness and visibility of CDG contributes to under-diagnosis 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, Kay Ivey, Governor of Alabama, do hereby proclaim May 16, 2017 as
Congenital Disorders of Glycosylation Awareness Day
in the State of Alabama.
Given Under My Hand and the Great Seal of the Office of the Governor at the State Capitol in the City of Montgomery on the 1st day of May 2017.
Kay Ivey