Coffin Siris Syndrome UK Conference 2024

I am Lyndsey, Mum of Joe. Joe has Coffin Siris Syndrome (CSS), a rare genetic condition which results in individuals having complex needs. Most individuals with CSS need specialist support and care throughout their lives.

When Joe was first diagnosed I was lucky enough to be able to attend a conference in America and meet other CSS families. It was life changing as an experience, and gave me hope for Joe's future.

In April 2024 I am hosting a conference for UK CSS families. We will be having a weekend of activities for CSS children and their siblings, informational talks for parents and carers and social times together. We hope to connect and build the UK community, with many families never having met other CSS families.

In order to make the conference affordable and accessible for all, the ticket prices have been capped and do not cover the full cost of the conference. Further funding is needed to provide engaging and interactive activities for the children, pay towards specialist childcare as well as a joint family event.

All donations will be gratefully received and wholly spent on the conference.