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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.

Metatropic Dysplasia Dwarf Registry

a/k/a: MDDR

Address

3393 Geneva Drive
Santa Clara, CA 95051
USA

Phone

408-244-6354

Fax

408-296-6317

800 Number

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TDD

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Email Address

figone@netgate.net

The Metatropic Dysplasia Dwarf Registry is a group comprised of parents and adults with metatropic dwarfism who have united to form a self-help group for the purpose of mutual support. The registry collects and exchanges information about metatropic dwarfism, which is a very rare form of dwarfism. The registry seeks to gather information that will help affected individuals, their families, and physicians. Established in 1980, the Metatropic Dysplasia Dwarf Registry was formed to collect data and case histories from families with metatropic dwarfism. To this end, the registry distributes a detailed registry questionnaire for the purposes of gathering information, networking, and mutual support. A list of physicians who are specialists in care and treatment of people with dwarfism is also available from the registry.

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