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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.


Myositis Support Group at the Hospital for Special Surgery


Address

2nd Floor Conference Center, Room A
535 East 70th Street
New York, NY 10021

Phone

2127747623

Fax

2127742333

Email Address

fischbeins@hss.edu

Description

The Hospital for Special Surgery’s (HSS) Myositis Support Group is a non-profit organization that meets at HSS. It's mission is to enhance coping, reduce isolation, and increase understanding of the inflammatory myopathies (polymyositis, dermatomyositis, and inclusion body myositis) through creating a community for mutual support and education for people with myositis and their family members. The group, which has been available since 1997, is free of charge, meets once a month and is coordinated by a licensed social worker. They have guest speakers who provide professional expertise to address issues and topics relevant to myositis. The Myositis Support Group offers an opportunity to provide support and understanding for people who are living with this rare disease. In addition, a monthly newsletter that summarizes the meetings is sent to all members. Polymyositis is a systemic connective tissue disorder characterized by inflammatory and degenerative changes in the muscles, leading to symmetric weakness and some degree of muscle atrophy. The areas principally affected are the hip, shoulders, arms, pharynx and neck. Dermatomyositis is a progressive connective tissue disorder characterized by inflammatory and degenerative changes of the muscles and skin. Inclusion body myositis (IBM) is a rare inflammatory muscular disorder that usually becomes apparent during adulthood. The disorder presents as slow progressive weakness and withering away (atrophy) of the muscles (myositis), especially of the arms and legs.

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