The 1p36 Family Trust
Supporting families with 1p36 deletion syndrome.
The 1p36 Family Trust is a registered charity devoted to supporting children and adults affected by 1P36 Deletion Syndrome and their families in the UK, by arranging conferences to share research and best practises concerning management of symptoms, treatment and also sharing educational content about 1P36 Deletion Syndrome.
About the Charity
Connecting families affected by 1p36 deletion syndrome
The 1p36 Family - UK and Ireland started on yahoo in 2008, as a group of families who wanted to connect with one another from all over the UK. The 1st annual summer family day was held in Southampton at Peppa Pig World with 6 families coming together. Over the years the group has grown and changed, we now have over 170 families from all over the UK and Ireland and we strive to connect people together so none feels isolated. The charity was set up by one of the parents in October 2018 and registered with the charity commission in the UK in February 2019.
What is 1p36 Deletion Syndrome?
1p36 Deletion Syndrome
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 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.
Where can I find out more?
Our charity is focused on providing practical information and the most up to date research to families at our biennial conference, and parent to parent support at our fun day and other social events.
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.
“On a bad day you find support, on a worrying day it's answers to questions that Dr's just can't provide and on a good day - you support someone else that needs help. It's the most amazing group of parents to be part of.”