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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.

a/k/a: Jonah's Just Begun

Address

P. O. Box 150057
Brooklyn, NY 11215

Phone

347-689-2186

Fax

347-710-3136

Email Address

jw.mps3c@yahoo.com

Chapters

1

Website

http://jonahsjustbegun.org/

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.

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