Resources- Specific Diagnosis Card Catalog- Craniofacial Disorders
Who To Contact
AboutFace USA
P.O. Box 969
Batavia, IL 60510-0969
(888) 486-1209
E-mail: info@aboutfaceusa.org
Web: www.aboutfaceusa.org
AboutFace provides emotional support and information to individuals with facial differences and their families and increases public awareness regarding facial differences. They have local chapters and a current listing is available through their 800 number. They provide parent-to-parent matching through their national database of families who are willing to share experiences and provide encouragement to each other. New parents are matched with those in the most similar circumstances.
AboutFace publishes the AboutFace Newsletter, four or six times a year for a requested donation. They also have brochures including,"AboutFace," a general brochure that describes services, "My Child has a Facial Difference," "You, Your Child & the Craniofacial Team," "Aperts, Crouzons, and Other Craniosynostoses Syndromes," and "Making the Difference." they also have "We all have Different Faces," a package of information for teachers and parents to present to schools to encourage inclusion of those with facial differences. AboutFace offers a new parent packet that contains what ever is appropriate for the individual situation.
Children's Craniofacial Association
13140 Coit Road
Suite 307
Dallas, Texas 75240
214-994-9902
800-535-3643
E-mail: contactCCA@ccakids.com
Web: www.ccakids.com
See also: Apert Syndrome, Craniosynostosis, Hemifacial Microsomia, Microtia, Treacher Collins Syndrome
CCA promotes the improvement in the quality of life for facially disfigured individuals and their Families, address the medical, financial, psychosocial, emotional and educational concerns relating to craniofacial conditions, and advocates on behalf of and promotes awareness for the facially disfigured.
CCA offers a toll-free physician referral service and emotional support line, workshops and symposiums to educate individuals and their families on medicial and insurance issues, financial assistance with secondary costs, such as travel, food, lodging when traveling out-of-town for surgery.
They have local support groups, and parents may be put in touch with others by signing a release of information card. CCA publishes a quarterly newsletter, CCA News, and has several booklets available for a nominal fee.
Let's Face It (LFI)
P.O. Box 29972
Bellingham, Washington, USA, 98228-1972
360-676-7325
E-mail: letsfaceit@faceit.org
Web: www.faceit.org
See also: Apert Syndrome, Carpenter Syndrome, Stickler Syndrome
LFI is dedicated to helping people with facial difference, their loved ones, the professionals who care for them, and the communities in which they live, to understand and to solve the problems of living with this disability. They assist facially different people to share their experiences, strengths, and hopes; provide continuing education to medical, nursing, and allied health professionals. LFI links parents with similar needs via the telephone.
Where to go to Chat with Others?
Crouzons
Crouzon Support Network - an online support group for individuals and families who are dealing with Crouzon Syndrome and other craniofacial anomalies. A place to share experience, mutual support, inspiration, and information.
Jaw Distraction
The Jaw Distraction/Craniofacial Surgery Discussion Group - this group is for all whose lives have been affected by a craniofacial difference or anyone who
has an interest in jaw distraction surgery and/or any other craniofacial surgeries.
Atresia Microtia
This community is intended as a forum for people with, and parents of children with Aural Atresia and/or Microtia.
Pierre Robin
Pierre Robin Network is comprised of parents, caregivers, family members, medical professionals and adults with PRS. The purpose of our group is to share
experiences with each other to benefit those with PRS.
Children with Craniosynostosis
Has your child had craniosynostosis or recently been diagnosed? Is your child currently being treated for positional molding? Are you just worried about the
shape of your child's head and not sure what to do? If your answer to any of these is "yes", then please join our group.
Cranioand Parents Support
Here you will meet other families that have a Cranio child and be able to share experiences, information, support, and be kept up do date on what CAPPS is doing
to spread awareness. This forum is open to anyone who has a child in their life that has, or is suspected of having, Cranio.
Learn More About It
What Are Craniofacial Abnormalities?
Craniosynostosis Information Page:
National Institute of Neurological Disorders and Stroke (NINDS)
Links
Center for Craniofacial Research & Diagnosis
Asher's Craniosynostosis Home Page
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