Rare Syndromes & Diseases

Children with Special Needs
Children with Special Needs Information

Ablepharon-Macrostomia Syndrome star
Ablepharon-Macrostomia Syndrome - AMS - is a rare disease that can cause craniofacial anomalies, and may also cause developmental delays, differences in a child's skin, fingers, genitals, nipples or the abdominal wall.

Dandy Walker Syndrome Information, Resources and Support star
Information, resources and support for families of children with Dandy-Walker Syndrome

Hemophilia: What Is It? star[offsite link]
This site provides excellent information on the basics of hemophilia, what causes it, treatments, etc.

Kawasaki Syndrome star
Kawasaki Syndrome, or Kawasaki Disease, is a serious though rare condition resulting in a sudden fever of five days or more; red rash; pink eyes; redness inside mouth, ´strawberry´ tongue; ´glove and sock´ hardening red rash and swelling in hands and feet; swollen glands; or cracked, inflamed lips.

Trisomy 18, Trisomy 13, and Related Disorders - A Guide for Professionals star[offsite link]
This site is recommended for health professionals working with families whose baby is diagnosed with Trisomy 18, 13, and Related Disorders and is part of the web site for the Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) .  "SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding diagnosis and care in trisomy 18, 13, and related disorders.  Support is provided during p

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