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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.

Bloom's Syndrome Registry

a/k/a: BSR

Address

NY Blood Center
310 E. 67th St.
New York, NY 10021

Phone

212-746-3956

800 Number

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TDD

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Email Address

jlg2003@med.cornell.edu

Website

http://www.med.cornell.edu/bsr/

The Bloom's Syndrome Registry (BSR) is a research effort dedicated to collecting clinical and genetic information about Bloom's syndrome, a rare inherited disorder characterized by short stature; a sun-sensitive redness in a "butterfly pattern" on the face; and susceptibility to infections and proness to develop cancer of many types. Established in 1960, the Bloom's Syndrome Registry meets with affected individuals and their families, compiles information concerning their pedigree history, and collects and preserves DNA and biological specimens. In addition, the registry maintains copies of affected individuals’ medical records and updates these records with new clinical findings and medical progress. The registry conducts ongoing research using registry data and specimens and publishes regular reports and reviews in medical journals.

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