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Fibrodysplasia Ossificans Progressiva (FOP)
Important
It is possible that the main title of the report Fibrodysplasia Ossificans Progressiva (FOP)is not the name you expected.
Synonyms
- FOP
- Myositis Ossificans Progressiva
Disorder Subdivisions
- None
General Discussion
Fibrodysplasia ossificans progressiva (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 metamorphosis, essentially a transformation into bone, progressively locking joints in place and making movement difficult or impossible. FOP is characterized by malformation of the big toe that is present at birth (congenital). As the disease progresses, there may be other skeletal malformations and the abnormal development of bone may lead to stiffness in affected areas and limited movement in affected joints (e.g.,knees, wrists, shoulders, spine, and/or neck).
Fibrodysplasia ossificans progressiva usually begins during early childhood and progresses throughout life. Most cases of FOP occur as the result of a sporadic new mutation. The genetic mutation that results in this disorder has been identified. FOP is caused by the mutation of a gene in the "BMP pathway", which is associated with the formation of the skeleton in the embryo and the repair of the skeleton following birth.
Resources
International Fibrodysplasia Ossificans Progressiva Association
P.O. Box 196217
Winter Springs
FL
32719-6217
Tel: (407)365-4194
Fax: (407)365-3213
together@ifopa.org
http://www.ifopa.org
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains
NY
10605
Tel: (914)428-7100
Fax: (914)997-4763
800: (888)663-4637
Askus@marchofdimes.com
http://www.marchofdimes.com
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda
MD
20892-3675
USA
Tel: (301)495-4484
Fax: (301)718-6366
800: (877)226-4267
TDD: (301)565-2966
NIAMSinfo@mail.nih.gov
http://www.niams.nih.gov/Health_Info
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay
WI
54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
800: (877)336-5333
mums@netnet.net
http://www.netnet.net/mums/
UCSF Fibrodysplasia Ossificans Progressiva Clinic
533 Parnassus Avenue
UC Hall U-504
Box 0734
San Francisco
CA
94143
Tel: (415)476-7242
Fax: (415)476-9976
800: (888)689-8273
referral.center@ucsfmedctr.org
http://www.ucsfhealth.org
Fundación FOP
Bonpland 1964- Dto 3 PA (1414) Ciudad Autónoma
Buenos Aires
Argentina
Tel: 54-911-15-4145-5391
Fax: 54-11-4771-7927
info@fundacionfop.org.ar
http://www.fundacionfop.org.ar
For a Complete Report:
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org
Last Updated: 11/17/2008
Copyright 1987, 1990, 1996, 2002, 2006, 2008 National Organization for Rare Disorders, Inc.
WebMD Medical Reference from the National Organization of Rare Disorders
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