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Pennsylvania House of Representatives
04/18/2024 04:15 PM
Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20170&cosponId=25821
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House of Representatives
Session of 2017 - 2018 Regular Session

MEMORANDUM

Posted: May 8, 2018 01:54 PM
From: Representative Stephen Barrar
To: All House members
Subject: Designating May 16, 2018 as "Congenital Disorders of Glycosylation (CDG) Awareness Day" in Pennsylvania
 
In the near future, I plan to introduce a resolution designating May 16, 2018 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 undertreated 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 HR934