- 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
