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...
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 help to highlight CDH to the public and policymakers etc. and will also help with research and improving outcomes.
How can you support World Birth Defects Day?
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