Proclamation Header

 

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 mis-diagnosed with only approximately 1,000 cases diagnosed globally, and only 150 cases currently reported in the United States; and

WHEREAS, lack of public awareness and visibility of CDG cont ibutes 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, Congenital Disorders of Glycosy lation Awareness Day is an opportunity to increase the accurate and timely diagnosis of this rare group of inherited metabolic disorders, known as CDG;

NOW, THEREFORE, I, BRIAN SANDOVAL, GOVERNOR OF THE STATE OF NEVADA, do hereby proclaim  May 16, 2017 as

 Congenital Disorders of Glycosylation Awareness Day in Nevada

 

 Proclamation Seal Only                         Signatures of Governor Brian Sandoval & Barbara Cegaske