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.

Zellweger Baby Support Network

a/k/a: ZBSN

Address

9310 Groundhog Drive
Richmond, VA 23235

Phone

919-741-9778

Fax

605-642-7525

Email Address

pamfreeth@zbsn.org

Chapters

1

Website

http://www.zbsn.org

The Zellweger Baby Support Network (ZBSN) is national, non-profit organization started by a group of parents whose children were born with Zellweger syndrome. This is a hereditary disorder characterized by a deficiency or absence of peroxisomes in the cells of the liver, kidneys and brain. These are small structures that help rid the body of waste products. Zellweger syndrome may affect brain development and can lead to other problems including an enlarged liver, high levels of iron and copper in the blood, and vision disturbances. The mission of the Zellweger Baby Support Network is to help families whose children are born with Zellweger syndrome and other peroxisomal disorders, and to raise awareness of these rare disorders. ZBSN also hopes to raise funds for research for treatment options and maybe even someday to find a cure.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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