- Chromosome 18 Registry & Research Society is an advocacy organization for families affected by this chromosome anomaly.
- Myotonic Dystrophy Foundation (MDF) provides the newest information on this condition.
- Rare Disorders Factsheet from the Center for Parent Information and Resources
- Unique – Understanding Rare Chromosome and Gene Disorders is a charity, supporting, informing and networking with families living with a rare chromosome disorder or some autosomal dominant single gene disorders associated with learning disability and developmental delay. Unique offers Rare Chromosome and Gene Disorder Guides in multiple languages
In Service to People with Developmental Disabilities
