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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.

Joubert Syndrome and Related Disorders Foundation

a/k/a: JSRDF

Address

1415 West Avenue
Cincinnati, OH 45215

Phone

614-864-1362

800 Number

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TDD

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Email Address

info@jsrdf.org

Website

http://www.jsrdf.org

The Joubert Syndrome and Related Disorders Foundation (JSRDF) is an international network of parents who share emotional support, knowledge, and experiences about Joubert syndrome, a rare genetic disorder characterized by partial or complete absence of a certain area of the brain (cerebellar vermis), diminished muscle tone (hypotonia), mental retardation, psychomotor retardation, abnormal eye movements, and respiratory abnormalities including episodes of abnormally rapid breathing. Established in 1992, the organization maintains a networking list, produces a regular newsletter, conducts biannual conferences, promotes public awareness, and seeks to educate physicians and their support teams about this rare disorder.

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