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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.: The US Hypophosphatasia Foundation


Address

121 Hawkins Place
#267
Boonton, NJ 07005

Phone

973-453-3093

800 Number

866-827-9937

Email Address

info@softbones.org

Description

Soft Bones, Inc.: The US Hypophosphatasia Foundation is a voluntary, non-profit organization whose mission is to provide information and a community to educate, empower and connect patients living with hypophosphatasia (HPP), a rare bone disease, as well as to raise money for more research with hopes of finding additional treatments or a cure. Money that is raised to benefit Soft Bones, Inc: The US Hypophosphatasia Foundation will be used for: funding research grants , maintaining a website that contains valuable resources for doctors, patients and caregivers, creation of educational materials to promote awareness, patient education meetings, and maintaining the International Hypophosphatasia Registry. 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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