You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**IMPORTANT**

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

National Congenital CMV Disease Registry

Address

Feigin Center
1102 Bates St
Houston, TX 77030-2399
USA

Phone

832-824-4387

Fax

832-825-4347

800 Number

--

TDD

--

Email Address

cmv@bcm.edu

Website

http://www.bcm.edu/pediatrics/index.cfm?Realm=99991126&This_Template=pedi_home.cfm

The National Congenital CMV Disease Registry, based at Baylor College of Medicine in Houston, Texas, collects information on infants born after 1990 with congenital cytomegalovirus (CMV). The registry is committed to identifying disease patterns over time; describing factors that may increase a mother's risk of delivering an infant with congenital cytomegalovirus infection; and providing the foundation for future intervention programs and collaborative research. All newborns with a confirmed diagnosis of congenital CMV are eligible to be registered. To do so, have the pediatrician obtain and complete our registry form. In addition to these activities, the Congenital CMV Disease Registry functions as a national clearinghouse for information about congenital CMV. It distributes reprints of medical articles on human cytomegalovirus infection, publishes a newsletter entitled "CMV Updates," and maintains a CMV Parent-To-Parent Support Network, and publishes an annual newsletter.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .