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 email@example.com 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.
CDH UK is proud to be a sponsor for the upcoming CDH International Meeting for Medical professionals and associated organisations on the 14th and 15th of November 2017 at Alder Hey Children’s Hospital, Liverpool. We particularly welcome patient Support Groups to this meeting. Full details as follows:1st Announcement
Congenital Diaphragmatic Hernia
International SYMPOSIUM Meeting – Liverpool 2017
November 14th – NOVEMBER 15TH 2017
Dear Colleagues and Friends...
It’s that time of year again folks, where we initiate and educate all things CDH…..welcome to CDH Awareness month 2017……….who’s in?Why is raising awareness of Congenital Diaphragmatic Hernia so important?
Well firstly, it helps to know what you are dealing with should it happen to you and it provides family and friends with knowledge too. Secondly, it opens up new connections for our families and for the charity, be that with other families, likeminded organisations, medical professionals or...
We are very pleased to be able to announce that CDH UK has agreed to fund the following research projects that have undergone a peer review process by Sparks Children’s Medical Research Charity and will be fund monitored by Great Ormond St Children’s Charity.Building a functional muscle to repair congenital diaphragmatic hernia – Professor Paolo De Coppi – UCL institute of Child Health
Long term health and health service use in children and adults with congenital diaphragmatic...