martes, 9 de octubre de 2007

Información en NORD sobre HME/OMC

Informacion en National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Exostoses%2C%20Multiple
Exostoses, Multiple
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Synonyms of Exostoses, Multiple :
Diaphyseal Aclasis
EXT
External Chondromatosis Syndrome
Multiple Cartilaginous Exostoses
Multiple Exostoses
Multiple Exostoses Syndrome
Multiple Osteochondromatosis

Disorder Subdivisions .
General Discussion Hereditary multipal exostoses (HME) is a rare skeletal disorder that is inherited in an autosomal dominant fashion.
As the name suggests, this disorder is characterized by multiple bony growths or tumors (exostoses), often on the growing end (epiphysis) of the long bones of the legs, arms, and digits.

These bony growths are covered by cartilage and usually continue to grow until shortly after puberty.
They may cause deformities, especially of the ankle, knee, and wrist.
Organizations related to Exostoses, Multiple
MHE Coalition
8838 Holly Lane
Olmsted Falls OH 44138-2701
Phone #: 440-235-6325800 #
e-mail: CheleZ1@aol.com
Home page: http://www.mhecoalition.com

MHE and Me
A Support Group for Kids with Multiple Hereditary Exostoses
14 Stony Brook Dr
Pine Island NY 10969
Phone #: 845-258-6058800 #
e-mail: mheandme@yahoo.com
Home page: http://www.geocities.com/mheandme

NIH/National Arthritis and Musculoskeletal and Skin Diseases
Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov