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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.


Fundacion Distonia (Dystonia)


Address

Avda. Irarr�zaval 5185
Of 311
Santiago, Chile

Phone

5622268874

Fax

5622267346

Email Address

contacto@distonia.cl

Description

The Fundacion Distonia (Dystonia) is a non-profit organization in Chile dedicated to providing information, support, and resources to individuals affected by dystonia, a group of neuromuscular disorders characterized by abnormal muscle rigidity that results in involuntary muscle spasms, abnormal movement patterns, and/or unusual fixed positioning of affected muscles. Dystonia may involve a particular area of the body (focal dystonia) or may be more generalized. Fundacion Distonia was established in 1997 and currently consists of approximately 145 members. The organization is committed to promoting awareness of dystonia among affected individuals and family members, health care professionals, and the general public; engaging in patient advocacy; and conducting support groups for individuals with dystonia and their family members. Fundacion Distonia also has a program to provide free botulinum toxin therapy to affected individuals who cannot otherwise afford such treatment. During such therapy, minute amounts of a toxin produced by the bacteria Clostridium botulinum (botulinum toxin) are injected directly into affected muscles, causing temporary muscular paralysis, thereby preventing spasms and abnormal contraction associated with dystonia. Fundacion Distonia also has informational brochures, a regular newsletter, and a web site on the Internet. The organization's materials are provided in Spanish and French.

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