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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.

Foundation Building Strength for Nemaline Myopathy

Address

2450 El Camino Real
Suite 101
Palo Alto, CA 94306

Phone

650-320-8000

Email Address

info@buildingstrength.org

Website

http://buildingstrength.org/

The Foundation Building Strength is a non-profit organization striving to stimulate, advance and move forward the science of treating myopathies while supporting the community of Nemaline Myopathy (NM) with information, resources and solutions. The foundation's primary goals are to: fund and stimulate research into treatment and a potential cure for NM; partner with companies to provide necessary medical equipment to those in need or when health insurance will not cover related expenses; create a panel of experts to answer medical and developmental questions to parents and those affected by Nemaline Myopathy; provide resources to bring NM communities together for bi-annual conferences; raise awareness about this rare disease. Nemaline myopathy is a rare genetic muscle disorder. Myopathy is a general medical term meaning “disease of the muscle.” At least six different forms of nemaline myopathy have been identified. The severity, age of onset, and inheritance pattern varies among these different forms of nemaline myopathy.

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