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.

Hajdu-Cheney Support Group

a/k/a: HCSG

Address

1301 Amelia Avenue
Portsmouth, VA 23707

Phone

757-465-8169

Email Address

hcsupport@cox.net

Website

http://www.hajdu-cheney.com

The Hajdu-Cheney Support Group is a non-profit organization whose mission is to provide a forum for individuals with Hajdu-Cheney Syndrome (HCS) and their families to connect and support one another. Hajdu-Cheney Support Group also offers a central repository for comprehensive medical information for individuals with HCS and their families.This information is presented to be understood by non-medical persons. Hajdu-Cheney Support Group also provides a list of medical providers experienced with HCS. Hajdu-Cheney syndrome is a rare connective tissue disorder characterized by ulcerating lesions of the palms of the hands and soles of the feet, and softening, absorption, and destruction of bones (acroosteolysis). Affected individuals may also have tiny, smooth segmented bones that are soft, moist, and warm to the touch (wormian bones); a small recessed jaw bone (mandible); a thick depression in the back of the head; and a persistent open joint between the bones of the cranium. Individuals with Hajdu-Cheney syndrome may also have loose joints (e.g., wrists and knees); webbing or fusion of the fingers and toes (syndactyly); and/or develop a condition called osteopetrosis. Osteopetrosis is characterized by a decrease in bone mass. This decrease makes an affected person susceptible to bone fractures and compression of the spine.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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