The 1p36 Family Trust was registered with the charity commission in February 2019, we support the families and friends of children born with 1p36 deletion syndrome.
1p36 deletion syndrome is a rare chromosomal disorder that occurs in approx. 1 in 5000 – 10,000 births.
It is unlikely that the families will come in to contact with another child with 1p36 deletion syndrome in their local community. Our online community helps us to keep in touch with each other and share experiences & knowledge.
We arrange a national conference every other year and in-between we have our family fun day.
We know this is a really scary time for all families. There is lots of information available from lots of different sources. Some of it is fantastic, some of it is not so helpful. Our recently diagnosed page has been put together by our members based on what they found helpful when their family member was diagnosed.