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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.

Fundación FOP

a/k/a: FFOP

Address

Bonpland 1964- Dto 3 PA (1414) Ciudad Autónoma
Buenos Aires,
Argentina

Phone

549-111-541455391

Fax

541-147-717927

Email Address

info@fundacionfop.org.ar

Chapters

2

Website

http://www.fundacionfop.org.ar

The Fundación FOP is a non-profit organization whose mission is to promote research and the improvement of persons with fibrodysplasia ossificans progressiva (FOP). FOP is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as the ligaments, tendons, and muscles. Specifically, this disorder causes the body’s skeletal muscles and soft connective tissue to undergo a transformation into bone, progressively locking joints in place and making movement difficult or impossible. Fundación FOP was created for two main purposes: to help improve the quality of life of people affected by FOP in Argentina, as well as to promote and collaborate with FOP research for finding the cure or an effective treatment to control the progression of the condition; to execute activities to raise the issue of rare and genetic diseases in the public agenda in Argentina, in order to promote public policies aimed at bettering the situation of people directly affected as well as their families.

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