|Posted:||March 31, 2019 05:10 PM|
|From:||Representative Stephen Barrar|
|To:||All House members|
|Subject:||Designating May 16, 2019 as "Congenital Disorders of Glycosylation (DCG) Awareness Day" in Pennsylvania|
In the near future, I plan to introduce a resolution designating May 16, 2019 as “Congenital Disorders of Glycosylation (CDG) Awareness Day” in the Commonwealth of Pennsylvania.
CDG are serious, life-threatening, and rare diseases that affect normal organ development and the neurological system. CDG remains frequently misdiagnosed, undiagnosed, and under treated due to the lack of awareness of these disorders, and many patients experience difficulties in accessing specialized services and proper support.
Awareness of the existence of CDG is the first step to provide answers, hope, and better lives to the families affected by these disorders. It is imperative that there be greater public understanding of this health issue and that is why I request your support for this important resolution.
Introduced as HR232