The 1p36 Family is made up of 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 – 10000 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 meet up once a year, with local events taking place in-between.
We know this is a really scary time for all families. There is lots of information available from lots of 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 they first had a diagnosis.