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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.

Loey Dietz Syndrome Foundation

a/k/a: LDSF


PO Box 22468
Baltimore, MD 21203

Email Address


Loey Dietz Syndrome Foundation (LDSF) is a voluntary organization whose mission is to encourage the education of medical professionals and lay communities about Loey Dietz syndrome (LDS) in order to aid in the identification, diagnosis, and treatment of this disorder. LDSF also fosters research on LDS and provides a support network for those impacted by it. Loeys-Dietz syndrome is a genetic disorder of connective tissue caused by a mutation in either of the two genes that tell the body how to make proteins called transforming growth factor beta receptor 1 (TGFBR1) and transforming growth factor beta receptor 2 (TGFBR2.) Because connective tissue is found throughout the body, LDS features can occur in the musculoskeletal, skin and cardiovascular systems.

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