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American Academy of Facial Plastic and Reconstructive Surgery, Inc. (AAFPRS)

Executive Vice President: Stephen Duffy
Public Information Contact: Rita Chua Magness, Director of Publications and Marketing
Address: 310 South Henry Street
Voice: (703) 299-9291
Fax: (703) 299-8898
Internet: www.aafprs.org
Last updated: 2011 Jun 30

Description:
The American Academy of Facial Plastic and Reconstructive Surgery, Inc., (AAFPRS) is the largest association of facial plastic and reconstructive surgeons in the world. The academy’s bylaws provide that AAFPRS fellows be board-certified surgeons with training and experience in facial plastic surgery as well as fellows of the American College of Surgeons or the Royal College of Surgeons. The AAFPRS website provides visitors with information about facial plastic surgery and the names of AAFPRS fellows in their area. Professional and consumer publications are available, with some in Spanish.

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American Academy of Otolaryngology--Head and Neck Surgery (AAO-HNS)

Executive Vice President: David R. Nielsen, M.D.
Public Information Contact: Jeanne McIntyre, Director of Communications
Address: 1650 Diagonal Road
Voice: (703) 836-4444
Fax: (703) 683-5100
Internet: www.entnet.org
Last updated: 2011 Jun 30

Description:
The nonprofit American Academy of Otolaryngology—Head and Neck Surgery (AAO-HNS) strives to unite, serve, and represent the interests of ear, nose, and throat specialists and their patients to the public, government, other medical specialists, and related organizations. AAO-HNS provides leaflets and geographic lists of physicians to the public at no charge. Holds annual meeting; contact AAO-HNS for date and location. AAO-HNS provides a professional bulletin, journal, directory, books, and other materials. Professional/consumer publications are available online and in print, with some in Spanish.

Publications:
The Bulletin
Frequency: monthly
Type: professional magazine
Otolaryngology--Head and Neck Surgery
Frequency: monthly
Type: scientific journal

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American Cleft Palate-Craniofacial Association (ACPA) and Cleft Palate Foundation (CPF)

Executive Director: Nancy C. Smythe
Public Information Contact: Lisa Gist, Director of Family Services
Address: 1504 East Franklin Street, Suite 102
Voice: (919) 933-9044
Toll-free Voice: (800) 24-CLEFT (2-5338)
Fax: (919) 933-9604
Last updated: 2011 Jun 30

Description:
The American Cleft Palate-Craniofacial Association (ACPA) is an international nonprofit association of more than 2,500 health care professionals who are involved in the treatment and research of cleft lip, cleft palate, and other craniofacial abnormalities. ACPA optimizes the interdisciplinary care of persons affected by craniofacial abnormalities. The Cleft Palate Foundation (CPF), which is the public service arm of ACPA, educates and assists the public regarding craniofacial anomalies and encourages research in the field. Holds annual convention; contact ACPA or CPF for date and location. A directory and professional/consumer fact sheets and brochures are available, with some in Spanish.

Publications:
Cleft Palate-Craniofacial Journal
Frequency: bimonthly
Type: professional journal

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American Speech-Language-Hearing Association (ASHA)

Executive Director: Arlene A. Pietranton, Ph.D., C.A.E.
Public Information Contact: ASHA Action Center
Address: 2200 Research Boulevard
Voice: (301) 296-5700
Toll-free Voice: (800) 638-8255
TTY: (301) 296-5650
Internet: www.asha.org
Last updated: 2011 Jun 30

Description:
The mission of the American Speech-Language-Hearing Association (ASHA) is to promote the interests of and provide the highest quality services for professionals in audiology, speech-language pathology, and speech and hearing science, and to advocate for people with communication disabilities. Holds annual conference; contact ASHA for date and location. Professional brochures/pamphlets, journals, and professional/consumer online publications are available. Some materials are available in Spanish.

Publications:
American Journal of Audiology
Frequency: semiannual
Type: journal
American Journal of Speech-Language Pathology
Frequency: quarterly
Type: journal
ASHA Leader
Frequency: at least monthly
Type: newspaper

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Birth Defect Research for Children, Inc. (BDRC)

Executive Director: Betty Mekdeci
Address: 976 Lake Baldwin Lane, Suite 104
Voice: (407) 895-0802
Last updated: 2011 Jun 30

Description:
Birth Defect Research for Children, Inc., (BDRC) provides parents and expectant parents with information about specific birth defects and their causes and treatments, support group referrals, and parent-matching services. BDRC also provides information about environmental exposures that may be associated with birth defects. To study these exposures further, BDRC sponsors the National Birth Defect Registry, an online research project that collects data on birth defects and prenatal/preconception exposures of both parents. A consumer newsletter, fact sheets, and other publications are available.

Publications:
Birth Defect News
Frequency: monthly
Type: e-mail newsletter

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Genetic Alliance

President /CEO: Sharon F. Terry, M.A.
Address: 4301 Connecticut Avenue, NW, Suite 404
Voice: (202) 966-5557
Toll-free Voice: (800) 336-GENE (4363)
Fax: (202) 966-8553
Last updated: 2011 Jun 30

Description:
Genetic Alliance improves health through the authentic engagement of communities and individuals. The organization is committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance’s network includes disease-specific advocacy organizations, universities, private companies, government agencies, and public policy organizations.

Publications:
Advocacy in Genetics
Frequency: quarterly
Type: newsletter
Policy Bulletin
Frequency: weekly
Type: newsletter
Newborn Screening Newsletter
Frequency: quarterly
Type: newsletter

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St. Joseph Institute for the Deaf (SJI)

President: Deborah S. Wilson
Chief Operating Officer: Cindy Costello
Address: 1809 Clarkson Road
Voice: (636) 532-3211
Fax: (636) 532-4560
Internet: www.sjid.org
Last updated: 2011 Jun 30

Description:
St. Joseph Institute for the Deaf (SJI) is committed to the spiritual and emotional growth and personal development of hearing-impaired children and young adults. SJI teaches children with hearing loss to hear, speak, and read from birth to eighth grade, regardless of race, religion, gender, or finances. Programs include early intervention; toddler, preschool, and kindergarten through eighth-grade classes; I-Hear teletherapy services; evaluations; local district partnerships; and mainstream consultancy. SJI has an onsite audiology clinic in Chesterfield, Mo.

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