Collaborating to improve outcomes
The main CDH research event is held every two years. This time it was the turn of France and the beautiful city of Lille to host this important event.
This event is where CDH UK gets an opportunity to share it’s work and any research. It also helps us to learn from other researchers and organisations on what is being done to improve outcomes for patients and their families.
CDH UK was excited to premiere the short film version of the CDH Patient Journey that we presented at the last symposium in Glasgow in 2022.
It was encouraging to see more patient organisations from other countries attend and to listen to their presentations and about research they had also funded. We now have representation for CDH in The Netherlands, Italy, Belgium, France, Germany, Sweden, Japan, USA and other countries. It is so important for families and medics to have local support in their country and we hope to see even more in the future.
We are very proud to see the CDH Patient Journey published by CDH UK being referenced in main session presentations. knowing that it is being used as a tool to help medics and researchers understand the issues that patients and their families may face during their lifetime is testament to our hard work.
It was also great to hear about the CDHeart project that we are collaborating on and helping to fund. We heard updates on other research that we have funded including building a functional muscle for CDH from Professor Paolo De Coppi, PEARL study from Dr Clare Skerritt and the DEFECT study from Dr Patrice Eastwood.
There were many amazing sessions and workshops and it was great to see more research into the psychological aspect of CDH that included improving counselling for patients and families and looking at neurodevelopment in babies and children. There was a workshop aimed at trying to develop a consensus on guidelines which we hope will be a successful project to develop and implement at international level.
We look forward to CDH 2026!
