1p36 Deletion Syndrome (pronounced one P three six) is a genetic condition in which a small amount of genetic material is missing (deleted) at the tip of the short arm of chromosome 1. 1p36 Deletion Syndrome (also known as Monosomy 1p36) causes birth defects, minor changes in physical appearance and learning difficulties of varying degrees. There are health common problems that are associated with the syndrome such as sight and hearing problems, low muscle tone, epilepsy and heart defects. All children with 1p36 deletion are unique and each has their own combination of challenges.
Our group is focused on family to family support and social events. Unfortunately we do not have the resources to be a source of medical information.
We have strong links with a charity called Unique. They support families affected by rare chromosome disorders. Most of our families are also members of Unique.
Unique produce an information booklet about 1p36 deletion which is based on both medical information and input from families. Our families feel it gives a balanced picture of the condition.