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 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 end of congress. Beverley our Chair and Research & Development Officer spoke to predominantly trainees at the education day about CDH UK and it’s work and how Healthcare...
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 the official hashtag which is #CDHTheHoleStory….. we want to tell the whole story this June about CDH…..what may begin as a hole in a diaphragm can lead to a whole set of challenges...
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 network means that we work as the patient voice for CDH and we also work closely with other conditions (and their respective patient representatives) that are covered by this particular...
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 world face every day.
CDH UK will be releasing a survey around this topic, as many of our families experience issues surrounding this topic and we...
On 25th May 2018 a new General Data Protection Regulation (GDPR) came into force. This is our statement.
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 a marathon in a month (26 miles), which you can do either in the comfort of your own home or in the great outdoors; it is totally up to you! If you have a garden, run around that, if you have a local running track,...
Our Annual General Meeting (AGM) will be held on Sunday 8th April at 12pm at:
The Fieldhouse Hotel
Please address any questions to the Committee by emailing firstname.lastname@example.org or in writing to the registered office address at least two weeks prior to the AGM to allow adequate time for any relevant paperwork to be ready to present during the meeting.