Where are patient education resources found for arthrogryposis multiplex congenita (AMC)?

Updated: Jan 03, 2019
  • Author: Mithilesh K Lal, MD, MBBS, MRCP, FRCPCH, MRCPCH(UK); Chief Editor: Maria Descartes, MD  more...
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Answer

See the list below:

  • The birth of a child with arthrogryposis may be a catastrophic event for parents and family. They may experience anger, feelings of guilt, denial, disappointment, repulsion, or depression. Family members may have difficulty understanding or accepting the diagnosis, and they may have a tendency to look for magical answers. Family members may also be concerned about additional unrecognized malformations, risk of mental retardation (MR), and recurrence risk.

  • The following up-to-date resources should be made available to families:

AVENUES

(A National Support Group for Arthrogryposis Multiplex Congenita)

PO Box 5192 Sonora, CA 95370

Phone: 209-928-3688

email: info@avenuesforamc.com

National Organization for Rare Disorders, Inc. (NORD)

55 Kenosia Avenue

PO Box 1968

Danbury, CT 06813-1968

Phone: 800-999-6673

Fax: 203-798-2291

email: orphan@rarediseases.org

NIH/National Arthritis and Musculoskeletal and Skin Disease Information Clearinghouse

One AMS Circle

Bethesda, MD 20892-3675

Phone: 301-495-4484

Shriner's Hospital for Children

Dr. Richard McCall

3100 Samford

Shreveport, LA 71103

Phone: 318-222-5704


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