CDH UK Christmas Newsletter 2019
We hope that you find inspiration and hope from the personal stories in the latest edition of our annual newsletter. Thank you to all who contributed! Please click on the image below to read the newsletter.
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 […]
June is CDH Awareness Month – Join in June 4 CDH!
June is #CDH Awareness Month and is an opportunity for you to make an impact on helping to improve outcomes for CDH and Eventration patients and their families and to help raise much needed funds to help support families emotionally and practically. Here is what you can do to help this June! First off is […]
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 […]
Rare Disease Day 2019
We have supported Rare Disease Day for many years and this year is no different. The theme for 2019 is:‘Bridging health and social care’. Focusing on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the […]
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 […]
Our GDPR Statement
On 25th May 2018 a new General Data Protection Regulation (GDPR) came into force. This is our statement.
Awareness Day National Radio Campaign
28th June is CDH Awareness Day and this year we have interviews with families and patients taking place up and down the country to make a real impact on raising awareness. This is the largest radio campaign ever undertaken for CDH. We will hear from one of our Patron’s Professor Paolo De Coppi from The […]
What a great IDEA!
CDH UK is pleased to announce the start of a new international alliance to bring together diaphragmatic and other abdominal wall anomalies organisations and patient representatives under the umbrella organisation called IDEA. IDEA is the acronym for International Diaphragmatic Hernia, Eventration and Abdominal wall Anomalies Alliance. The conditions covered are: Congenital Diaphragmatic Hernia Acquired or […]
JOG 4 JUNE 4 CDH! A Marathon In A Month!
June is CDH Awareness Month and so we are inviting you to take part in an awareness/fundraising campaign that everyone can take part in (even the dog!), that you can fit in with you lifestyle and that gets you up and moving for a great cause! We are asking you to walk, jog or run […]