Scroll
To Top
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.


Jonahs Just Begun – Foundation to Cure Sanfilippo, Inc.


Address

P. O. Box 150057
Brooklyn, NY 11215

Phone

3476892186

Fax

3477103136

Description

The Jonahs Just Begun - Foundation to Cure Sanfilippo, Inc. is a voluntary, non-profit organization whose mission is to educate the public and health care professionals about Sanfilippo syndrome (mucopolysaccharidoses type III or MPS type III), raise funds for research that will hasten the diagnosis of children with Sanfilippo syndrome, recruit patients to participate in their natural history study, and raise funds for treatment research. MPS disorders are a group of rare genetic disorders caused by a deficiency of one of the lysosomal enzymes. Sanfilippo syndrome is one of seven MPS disorders and has been subdivided into four subgroups: MPS-III types A, B, C and D. Disease severity and age of onset vary by type, but all are associated with a progressive loss of speech, motor and cognitive function.

Please Note

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 the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.