You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

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


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


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



800 Number




Email Address


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.

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

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

Copyright ©2015 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .