May 16, 2019: Congenital Disorders of Glycosylation (CDG) Awareness Day

WHEREAS, Congenital Disorders of Glycosylation (CDG) are a growing group of over 100 rare metabolic disorders that affect normal organ development and the nervous system, leaving children, adolescents, and adults with significant physical and developmental disability; and,

 

WHEREAS, CDG is severely under-diagnosed and misdiagnosed, with only about 1,000 cases diagnosed world-wide and only about 200 cases currently reported in the United States; and,

 

WHEREAS, lack of public awareness and knowledge of CDG leads to under-diagnosis, family isolation, and daily challenges in accessing specialized services and proper rehabilitation and support; and,

 

WHEREAS, early diagnosis of CDG is critical for timely management of medical symptoms, connection to the CDG community, genetic counseling, and, when available, treatment and therapy and,

 

WHEREAS, the goal is to raise awareness and increase the accurate and timely diagnosis of this rare group of inherited metabolic disorders;

 

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim May 16, 2019, as Congenital Disorders of Glycosylation (CDH) Awareness Day in Michigan.