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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.

Focus On Rhabdo

a/k/a: Focus On Rhabdo

Address

100 Middlesex Blvd. 08536
Ste 212
Plainsboro, NJ 08536

Phone

818-554-6480

Fax

609-799-4321

Email Address

info@focusonrhabdo.org

Chapters

80

Website

http://www.FocusOnRhabdo.org

Focus on Rhabdo is a collaborative advocacy group of community members, researchers, and clinicians working together toward a cure of rhabdomyosarcoma. Their missions is treefold: to cure all cases of rhabdomyosarcoma by regressing tumor formation, to develop treatments with little to no long-term side-effects, and to raise awareness of rhabdomyosarcoma within the medical community to reduce diagnostic delay and medical error. Their initiaties include a study of rhabdomyosarcoma tumor specimens for further understanding to this disease as well as providing the patient community with current ongoing clinical trial information. FocusOnRhabdo creates educational materials for physicians and patients and is working on compiling a rhabdomyosarcoma presentation booklet to bring further awareness of this rare disorder in the medical community. This organization also hosts a forum and blog to connect the rhabomyosarcoma community to one another. Rhabdomyosarcoma is a rare disease in which tumors form in the muscles that are attached to bone. The most common tumor sites are around the head and neck, the urogenital tract, and the arms and legs. Symptoms vary, depending on location of the tumor. Currently the cause is unknown.

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