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


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.

Chromosome 9pminus Network

a/k/a: Chromosome 9P


P.O. Box 524
Appleton, WI 54912

800 Number




Email Address


The Chromosome 9pminusNetwork is a 501(c)(3) non-profit, parent-based support group whose mission is to improve the lives of families affected by 9p Deletion Syndrome. We accomplish this by connecting families and increasing knolwedge by proividing information about this rare genetic disorder. 9p Deletion syndrome (aka 9p-, Alfi's syndrome, or 9p-Syndrome, is a rare genetic anomaly in which a portion of the short (p) end of the 9th chromosome is deleted or missing. The disorder is characterized by varying symptoms and degrees of affliction. The Chromosome 9pminus Network disseminates information to families thorugh yearbooks, newsletters, a Yahoo eGroup, Face Book page and Family Reunions. There is no charge for membership. Currently there are nearly 380 members worldwide, with most based in the US. public.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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 ©2015 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. .