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.
PO Box 52
Rye, NY 10580
The Jacob's Cure is a non-profit foundation dedicated to raising the funds necessary to cure Canavan disease, a rare genetic neurological disorder characterized by the spongy degeneration of the white matter in the brain that affects children at birth. Since its inception in September, 2000, Jacob's Cure allocates 95% of monies raised to research in gene therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the disease. Their efforts have resulted in successful gene therapy trials and pharmaceutical interventions that have, in most cases, stopped the progression of this quickly deteriorating disorder in children afflicted with Canavan disease worldwide. In addition, Jacob's Cure is responsible for creating/funding the Canavan Research Lab at UMDNJ (University of Medicine and Dentistry of New Jersey) under the direction of Dr. Paola Leone. The efforts at the Canavan Research Lab focus solely on research and intervention that will save the children dying of Canavan today.
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.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.