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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.

Soft Bones, Inc.

Address

121 Hawkins Place
#267
Boonton, NJ 07005

Phone

201-317-1818

Email Address

jane@softbones.org

Website

http://www.softbones.org

The Soft Bones, Inc. is a voluntary, non-profit organization whose mission is to give families and physicians important information and resources about hypophosphatasia (HPP), a rare bone disease, as well as to raise money for more research with hopes of finding a treatment or cure. Money that is raised to benefit Soft Bones, Inc. will be used for: funding fellowships for a dynamic scientist or doctor to study under the world’s leading researchers on HPP; creating a web site that contains valuable resources for doctors who are treating patients with HPP, parents of children with HPP, dentists who have patients with HPP, and patients themselves. The website will also connect people who are dealing with this disease with each other so that they can seek advice, comfort, knowledge and basic information on HPP; creation of educational materials and awareness of HPP; financially supporting research. HPP is a rare, inherited metabolic bone disease that occurs when the body does not produce enough of an enzyme called alkaline phosphatase. The enzyme has a crucial role in bone mineralization, which in turn is important to the development of healthy bones and teeth. Without adequate bone mineralization, bones can bend easily ("soft" bones) and especially baby teeth can be "lost" at an early age.

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