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AboutFace
AboutFace is an international organization providing support
and information to families and individuals with facial difference. Networking
database maintained at each of the national offices and with local chapters
and contact people. Resources include newsletters, videos, publications,
lending libraries, and more. (Anna Pileggi, AboutFace, 99 Crowns Lane,
Toronto, Canada M5R 3P4; 416/944-3223,800/665-3223; FAX 416/944-2488;
U.S. Office, Pam Onyx, Box 93 Limekiln, PA 19535; Phone:
800-225-FACE; FAX 610/689-4479;
About Face USA e-mail: abtFace@AOL.com
About Face International e-mail: abtface@interlog.com).
The
Alliance of Genetic Support Groups
The Alliance is an advocacy network of people who have
genetic conditions, parents and professionals. An updated Directory of
National Genetic Voluntary Organizations is available ($35.00). (The Alliance
of Genetic Support Groups 4301 Connecticut Avenue, NW, Suite 404 Washington,
DC 20008-2304 (202) 966-5557 Helpline: (800) 336-GENE (4363) Fax: (202)
966-8553
e-mail: info@geneticalliance.org
Home Page: http://www.geneticalliance.org
Executive Director: Mary Davidson)
The
American Cleft Palate; Craniofacial Association (ACPA)
Dedicated to all aspects of facial birth defects,
this 53 year old international network of professionals includes over
30 disciplines. With all aspects of patient and family care being represented,
they are working to establish standard guidelines for care and for fair
insurance coverage. They are encouraging the team approach to the care
of all patients. (Nancy Smythe, 1218 Grandview Avenue, Pittsburgh, PA
15211;
Phone:412-481-1376; FAX 412-481-0847).
Apert
Support and Information Network
Provides support through newsletter "APERT NEWS," networking
list for parents in USA plus several other countries and get togethers
mostly in Northern California. (Christine Clark, Director, Apert Support
and Information Network, P.O. Box 1184, Fair Oaks, CA 95628;
Phone: 916-961-1092
email:
apertnet@ix.netcom.com).
Association
for Birth Defects (ABDC)
Phone:
407-245-7035
Carpenter
Syndrome Network
Support and information network trying to link parents
of children with Carpenter Syndrome. (Cathy Sponsler, Box 4215-48, 26661
Bear Valley Road, Tehachapi, CA 93561;
Phone: 805-821-1313; e-mail: Carpenter.syndrome@php.com
).
The
Cleft Palate Foundation (CPF)
This public service and education foundation provides services
to patients and families. CPF operates a 24-hour toll free CLEFTLINE service
(800-24-CLEFT) for affected individuals and their families, and offers
brochures and fact sheets on various aspects of clefting and other craniofacial
anomalies. Some are available in Spanish. A selected bibliography for
parents is also available. Provides information about cleft craniofacial
teams and family support groups. (Nancy Smythe, 1218 Grandview Avenue,
Pittsburgh, PA 15211;
Phone: 412-481-1376; FAX 412/481-0847).
Craniofacial
Foundation of America
Serves as a national resource for patients and families
with craniofacial anomalies. It produces educational materials and networks
patients and families. The foundation offers financial support for nonmedical
expenses to patients traveling for evaluation and treatment to the Tennessee
Craniofacial Center. Their latest free publication is "Craniosynostosis:
Diagnosis and Current Surgical Treatment." (Terri Farmer, Craniofacial
Foundation of America, Erlanger Medical Center, 975 East Third Street,
Chattanooga, TN 37403; 423/778-9192, 800/418-3223; internet: http://www.craniofacialcenter.com/found.html).
Gums
Phone:
414-336-5333
Let's
Face It
Let's Face It publishes a 50 page Resource List once a
year. To receive your free copy of our 1996 Resource List, please send
a 9" x 12" self-addressed envelope, stamped with a $3.00 stamp to: (Let's
Face It, P.O. Box 29972, Bellingham, WA 98228-1972. Call 360-676-7325
for bulk orders).
Mobius
Syndrome Network
This growing network has a newsletter and address list
for linking up people all over the United States. (Vicki McCarrell, 6449
Gerald Avenue, Van Nuys, CA 91406; Vicki 310-470-2000, or Lori Thomas
805-267-2570).
MUMS
Phone:
414-336-5333
National
Organization for Rare Disorders (NORD)
NORD is an educational link for organizations and individuals
concerned with a rare disorder. (NORD, Box 8923, New Fairfield, CT 06812-1783;
Phone:
203-/746-6518, 800-999-6673;
Internet -http://www.NORD-RDB.com/~orphan).
email: orphan@nord-rdb.com
National
Information on Child/Health Education (NICHE)
800-695-0285 or 202-884-8200 NCEMCH 202-625-8400
Neurofibromatosis,
Inc. (NFI)
The organization for families and individuals offers
free information about this neurological genetic disorder, identifies
local support groups, refers to local medical resources, encourages research,
educates legislators of NF family needs. (Mary Ann Wilson, 8855 Annapolis
Road, Suite 110, Lanham, MD 20706-2924, 800-942-6825, TT 410/461-5213,
in Maryland
301-577-8984).
Phoenix
Society for Burn Survivors
An international network for burn survivors and their families,
founded by Alan Breslau, an airplane accident survivor. Trained coordinators
are located throughout the world. Newsletter, lending library, books and
tapes for sale. (Alan Breslau, 11 Rust Hill Road, Levittown, PA 19056;
Phone:
215-946-2876, 800-888-BURN; FAX 215-946-4788).
Pierre
Robin Network
Their purpose is to network families of children diagnosed
with Pierre Robin Syndrome (PRS) and help those who are interested in
PRS. Vist their
web site at http://www.pierrerobin.org
or
email at prn@pierrerobin.org.
Treacher
Collins Foundation
This network links families with Treacher Collins and is
directed by Hope Charkins-Drazin and David Drazin, a social worker and
a psychologist who have a child with Treacher Collins Syndrome. (Hope
Charkins and David Drazin, Box 683, Norwich, VT 05055;
Phone: 802-649-3050, 800-823-2055).
Wide
Smiles
An information and support network begun for parents adopting
children with cleft lip and palate. Their extensive resources include
a quarterly magazine, phone and computer support, books, and much more.
A new resource is Cleft Talk an on-line service at listproc@mother.com.
$18 per year for the magazine. (Joanne Green, Box 5153, Stockton, CA 95205-0153;
Phone: 209-942-2812;
e-mail: widesmiles@aol.com; internet:
http://www.adopting.org/ws.html).
The Tennessee Craniofacial
Center, part of the Erlanger Health System, is located in Chattanooga,
Tennessee. The Center, led Larry A. Sargent, M.D., specializes in the
evaluation and treatment of patients of all ages with craniofacial deformities.
Location: 975
East Third Street. Chattanooga, Tennessee 37403
Phone: 423-778-9192 or 800-418-3223 Fax: 423-778-8172
Internet: www.craniofacialcenter.com Copyright ©1997, 2000, Erlanger
Health Systems
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