The National Organization for Rare Disorders (NORD)

Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,200 diseases.

Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,200 diseases.

View sample report

Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

NORD's Washington OfficeRead about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

**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.

22q and You Center

Address:
The Department of Clinical Genetics
The Children's Hospital of Philadelphia
Philadelphia, PA 19104

Phone: 215-590-2920
Fax: 215-590-3298
800 Number: --
TDD: --
Email Address: lunny@email.chop.edu

The 22q and You Center, located within the Children's Hospital of Philadelphia, is a national nonprofit voluntary health organization dedicated to providing information and support to individuals, families, and medical professionals interested in the chromosome 22q11.2 deletion. This chromosomal disorder is also known as DiGeorge anomaly and velocardiofacial syndrome (VCFS). Opitz G/BBB syndrome, asymmetric crying face syndrome, CATCH 22, and conotruncal cardiac anomaly are also included in this group of disorders. Established in 1996 and consisting of 2,500 members, the 22q and You Center publishes a quarterly newsletter titled, "22q and You."

Chapters: 5
Website: http://www.cbil.upenn.edu/VCFS/22qandyou/


The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.

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Last modified Tuesday, September 07, 2010