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...
Please download our latest CDH UK newsletter. This Winter edition has been guest edited by Beverley Power. Please read how she became involved with the charity plus many more stories and updates.
WHAT IS THE GLOBAL PAEDSURG PROJECT?
It is a multi-centre prospective cohort study of congenital anomalies to compare outcomes between LMICs and high-income countries (HICs) globally.
What is a prospective cohort study?
A prospective cohort study in a nutshell is a study design that follows over time a group of similar individuals (cohorts) who differ with respect to certain factors under study, to determine how these factors affect rates of a certain outcome.
DHREAMS – what does the Acronym stand for?
Diaphragmatic Hernia Research Exploration Advancing Molecular Science
Where is the study based?
The study is based at the Colombia University Medical Centre in New York and includes medical centres (hospitals) from across the US and other parts of the world.
Wendy Chung, MD, PhD
Kennedy Family Professor of Pediatrics and Medicine
Julia Wynn, MS
Principal Study Coordinator
Certified Genetic Counselor
Becca Hernan, MS
On 25th May 2018 a new General Data Protection Regulation (GDPR) came into force. This is our statement.
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 Institute for Child Health and Great Ormond Street Hospital, along with our Secretary & Trustee Beverley Power live from the London Studio and broadcasting out to BBC Radio Three Counties...
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 incidental Diaphragmatic Hernia
Eventration of the Diaphragm
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,...