Goldenhar Syndrome Support Network
Making a world of difference in a world of facial differences...
A program of ameriface
About Us

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AmeriFace, formerly AboutFace USA, was founded in 1991 to provide educational and emotional support to persons born with craniofacial anomalies and their families. The organization soon expanded to also serve persons with acquired facial differences due to burns, trauma and disease, and in 2004 partnered with cleftAdvocate under the same corporate umbrella.

In 2007, we welcomed the Crouzon Support Network and the Goldenhar Syndrome Support Network to the AmeriFace family of networking and educational resources.  In 2008, we welcomed the Treacher Collins Connection (TCConnection).  Read about the history of these parent/patient-run support organizations and their founders here. >>>

Services include referrals to qualified cleft/craniofacial teams, access to educational materials about these medical conditions, emotional support for affected individuals and their families, a campaign to promote general public awareness about facial differences and the networking of individuals and families for support purposes.

Our programs provide educational and networking opportunities for families on a daily basis through the Pathfinder Outreach Network, a nationally-recognized program offering a toll-free support hotline, on-line support at the Family-to-Family Connection, comprehensive websites, newborn outreach programs at area birthing hospitals throughout the country, an annual family conference and periodic newsletters.

Volunteer staff and peer counselors strive to educate medical and other professionals about the needs of families, both medical and emotional. We work to see a time that no newborn is sent home from the hospital without a proper feeding device and a referral to a cleft/craniofacial team.

We address healthcare disparities in the craniofacial patient population by educating families about the need for interdisciplinary team care and by helping to secure insurance coverage and/or other medical financing through social programs and like-minded charities. We look forward to a time when insurance coverage will not be a battle of “cosmetic” versus “reconstructive” or “medical” versus “dental”.

By increasing public awareness, it is our goal to see a time very soon when persons with facial differences are accepted for who they are, and are not judged by their appearance by the general public, educators, employers, and even members of their own families.

AmeriFace, formerly AboutFace USA, is a 501(c)(3) tax-exempt public charity (#32-0085490).
The Goldenhar Syndrome Support Network is a program of
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