May 16, 2018: Congenital Disorders of Glycosylation (CDG) Awareness Day
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, Rick Snyder, governor of Michigan, do hereby proclaim May 16, 2018 as Congenital Disorders of Glycosylation (CDG) Awareness Day in Michigan.