For many years CDH UK has taken part in the development of standards of care, recommendations, reviews and information for patients. We have also provided focus groups for researchers and for the creation of our own information for patients and their families.
More recently we have become Patient Representatives and advisors for National and International reference networks such as SCANS (Scottish Congenital Anomalies Network Service) and ERNICA (European Reference Network for Inherited and Congenital Anomalies).
In 2018 we developed an idea for a new Alliance to encourage and enable collaboration with organisations supporting Congenital Diaphragmatic Hernia (CDH), Gastroschisis, Omphalocele/exomphalos and Congenital Hiatus Hernia (CHH) as a direct result of our work with ERNICA and a need to encourage more patient engagement in these other abdominal wall and diaphragmatic defects.
Here are some of our past and present contributions.