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Copyright 1996, 1997, 2003, 2007
Synonyms of Bjornstad Syndrome
- Deafness and Pili Torti, Bjornstad Type
- Pili Torti and Nerve Deafness
- Pili Torti-Sensorineural Hearing Loss
Disorder Subdivisions
General Discussion
Bjornstad syndrome is an extremely rare inherited disorder characterized by the presence of abnormally flattened, twisted hair shafts (pili torti) and, in most cases, deafness (sensorineural hearing loss). Hearing loss typically affects both ears (bilateral). Individuals with this disorder usually have dry, fragile, lusterless, and/or coarse scalp hair as well as areas of patchy hair loss (alopecia). Both autosomal dominant and recessive inheritance have been reported in the medical literature.
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Organizations related to Bjornstad Syndrome
- Alexander Graham Bell Association for the Deaf and Hard of Hearing
3417 Volta Place, NW
Washington D.C. 20007-2778
Phone #: 202-337-5220
800 #: 866-337-5220
e-mail: info@agbell.org
Home page: http://www.agbell.org
- American Academy of Audiology
11730 Plaza America Drive, Suite 300
Reston VA 20190
Phone #: 703-790-8466
800 #: 800-222-2336
e-mail: infoaud@audiology.org
Home page: http://www.audiology.org
- Better Hearing Institute
1444 I Street, NW, Suite 700
Washington DC 20005
Phone #: 202-449-1100
800 #: 800-327-9355
e-mail: mail@betterhearing.org
Home page: http://www.betterhearing.org
- Birth Defect Research for Children, Inc.
800 Celebration Ave, Suite 225
Orlando FL 34747
Phone #: 407-566-8304
800 #: --
e-mail: staff@birthdefects.org
Home page: http://www.birthdefects.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- Hearing Loss Association of America
7910 Woodmont Avenue
Suite 1200
Bethesda MD 20814
Phone #: 301-657-2248
800 #: N/A
e-mail: info@hearingloss.org
Home page: http://www.hearingloss.org
- NIH/Nat'l Institute on Deafness & Other Communication Disorders Information Clearinghouse
1 Communication Ave
Bethesda MD 20892-3456
Phone #: 301-402-0900
800 #: 800-241-1044
e-mail: nidcdinfo@nidcd.nih.gov
Home page: http://www.nidcd.nih.gov
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
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