If your child is diagnosed with Ablepharon Macrostomia Syndrome, you may have many questions about the disorder and what it might mean for your son or daughter. The resources below may be of help in finding resources and support for the best quality of life and richness of experience for your sweet baby or child, as well as other families who share similar concerns and goals.
It is important to share information with family and friends who may require patience or be unexpected sources of support and encouragement.
National Organization for Rare Disorders
NORD - Ablepharon Macrostomia Syndrome
http://www.rarediseases.org
Allison Brooke's Web Page on Ablepharon-Macrostomia Syndrome
http://www.angelfire.com/ga2/AMS
Craniofacial Disorders - Family Village Links
http://www.familyvillage.wisc.edu/lib_cran.htm
FACES: The National Craniofacial Association
http://faces-cranio.org/links.htm
Web MD Article - Ablepharon-Macrostomia Syndrome (AMS
http://my.webmd.com/hw/health_guide_atoz/nord1093.asp
Browse for books of interest that may be found at your local library, bookstore, doctors office, parent group or online retailer for books about Children with Ablepharon-Macrostomia Syndrome or Craniofacial Disorders
