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News and Events

We are a registered charity with the charity commission, our charity number is 1181988, our official name is The 1p36 Family Trust, please consider fundraising for us so we can continue to support the growing number of families affected by 1p36 deletion syndrome.


We hold an annual meeting during the UK summer holidays. This is chance for parents and children to get-together, share experience and knowledge, but most importantly to have fun together. We started the Family Fun Day back in 2011, for the majority of people who came, it was the 1st time they had met another child with the same deletion, we have new families joining us every year and it is very exciting to see our family grow.


If you would like to know more about these events please join our Facebook page:

This is a closed group, one of the admin team will message you before approval.

Past Events


August 2018 – Cheltenham – Please join the Facebook group to find out the details of this year’s annual meeting.

August 2017 – Ashbourne, Derbyshire – Lunar Lift Off

August 2016 – Birmingham – Drayton Manor

August 2015 – Bradford – Conference hosted by the Graven Family supported by Bradford Toy Library

August 2013 – Belfast, Northern Ireland – Conference hosted by the Coates Family held in Comber Leisure Centre

August 2012 – Birmingham

August 2011 – Southampton – Peppa Pig World

August 2010 – Birmingham

August 2008 – Longleat, Wiltshire

Conference 2020

During the summer holidays of 2020, we will be hosting our largest conference to date. We currenlty have over 40 families (and growing) interested in attending the 3 day conference.


We will holding the conference in London, this conference is for the families and caregivers of children with 1p36 deletion syndrome. We also welcome consultants, therapists and teachers who want to learn more about 1p36 Deletion Syndrome. We will have sessions on 1p36 deletion syndrome, seizure activity, behavioural issues, communication tools, therapies availbale to your children, and more.


The host families are working hard to fundraise to cover the cost of the conference,

we would like to make this event as affordable for these families. If you would like

to donate please use this PayPal button.