The CDH Patient Journey
We are very proud and excited to have had The CDH Patient Perspective Journey published in Frontiers in Pediatrics (neonatology section) in February 2023. We started to work on producing the patient journey in 2016 following a need to create one for the basis of the development of a CDH Mobile App we had started […]
CDH 2022 Event
CDH2022 is a follow on from previous symposia that is this time being held in Glasgow, Scotland. Bringing together Medical professionals, Patients Organisations and Researchers, it is the essential opportunity to hear the latest basic science and clinical research in congenital diaphragmatic hernia care. CDH UK is proud to be a sponsor at this event […]
CDH UK helps develop new guidelines to improve pregnancy trials
New guidelines to improve pregnancy trials will pave way for novel therapies for women and babies. A new grading system to monitor complications during clinical trials involving pregnant women, which will significantly improve their safety, has been co-developed by UCL researchers and an international team of experts including CDH UK. Clinical trials in pregnant women […]
Experts at CDH UK warn of ‘no deal’ Brexit effects
Chairperson of CDH UK Beverley Power, along with other Rare Disease experts wrote to The Lancet to voice their concerns of a no deal Brexit on the Rare disease community and in particular patients. The correspondence was published in The Lancet in December 2020 and the full letter can be read in our research hub. […]
The Journey of a Little Balloon
Many years ago a team based in Leuven, led by Professor Jan Deprest, set out on an incredible journey with the help of a little balloon. They set out to find out if survival rates could be improved in both severe and moderate cases of Congenital Diaphragmatic Hernia (CDH). The journey wasn’t easy and was […]
Coronovirus (Covid-19)
Many of you may be worried about the Novel (Covid-19) Coronavirus situation and you may be seeking some advice, particularly if you or your child have any complications or ongoing medical issues. CDH UK has not to date received any specific advice relating to the CDH population and we advise you to keep up to […]
CDH UK makes a significant contribution at the 66th BAPS Congress
CDH UK has again attended the annual British Association of Paediatric Surgeons Congress, but both as an exhibitor and speaker this year. The event was a huge success and CDH UK made a great impact following two insightful presentations at the education day at the start of Congress and at the Scientific meeting at the […]
World Birth Defects Day!
3rd March is World Birth Defects Day and CDH UK has parnered with the initiative to raise awareness of Birth Defects. Why is this day important to CDH UK and the patients and families it supports? Well…… because CDH is congenital condition, which means it is a type of birth defect, then this initiative will […]
European Reference Networks (ERNs) What they are and how they work.
CDH UK is very proud to be a founding member of ERNICA which is just one of many European Reference Networks (ERNs). ERNICA was established in 2016 for Inherited and Rare Congenital Anomalies, which includes CDH. We are also a member of the ERNICA Advisory Board and the Scientific Committee. Being a part of this […]
ERNICA website goes live!
The European Network for Rare and Inherited Congenital Abnormalities (ERNICA) website has now gone live and we would like your feedback on it to ensure that it can continue to develop and improve for patients as well as Medics. You can read all about ERNICA and find out about CDH UK’s involvement as a founding […]