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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 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...

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CDH UK collaborates with the Global Paedsurg Project

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? to searc 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.   What...

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CDH UK partners with the DHREAMS Study

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 Principal Investigator Kennedy Family Professor of Pediatrics and Medicine Julia Wynn, MS Principal Study Coordinator Certified Genetic Counselor Becca Hernan, MS Study...

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Congenital Diaphragmatic Hernia International Symposium 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...

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CDH UK funds vital research to help improve outcomes for CDH patients

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...

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Call out for Research Grant applications goes live!

We are pleased to invite applications for Research Grants from the CDH UK Research Fund via our partner Sparks Children’s Medical Research Charity, as from Friday 1st April 2016 until Wednesday 18th May 2016. Further information can be found along with application details via our Partner link. CDH UK would like to thank all of it’s supporters and donors who have helped us to raise an incredible amount of money for our Research Fund and anyone who would like to contribute by fundraising...

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CDH UK responds to the MBRRACE-UK Confidential Enquiry into CDH at Birmingham NEC

Wednesday 11th December 2014 saw MBRRACE UK launch it’s first confidential enquiry report into CDH to a large audience of clinicians, healthcare workers, public bodies, departments, charities and other agencies. Responses were made by CDH UK, BAPM, BMFMS, BAPS, Quality Assurance/NHS Screening Programme. CDH was the first topic chosen for the project and the report was much awaited. CDH UK’s response to follow. Please read the lay report and the full report here: LAY SUMMARY https://www.facebook.com/l.php?u=https%3A%2F%2Fwww.npeu.ox.ac.uk%2Fdownloads%2Ffiles%2Fmbrrace-uk%2Freports%2FPerinatal%2520Deaths%2520Lay%2520Summary.pdf&h=5AQEgIRbf FULL...

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CDH UK to speak at International CDH Conference in Rotterdam

June 28th is CDH Awareness Day Here is what we have going on! ‘WEAR 4 AWARENESS’ – encouraging everyone to wear a CDH Awareness item on CDH Awareness day on CDH UK has been invited to speak at this years CDH conference/workshop in Rotterdam, which has been arranged by Professor Dick Tibboel and colleagues on behalf of the CDH EURO CONSORTIUM,  and will take place at the Erasmus MC Sophia Children’s Hospital, Rotterdam on the 9th-11th June 2013. The conference aims to...

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Please help and sign our e-petition for funding for research!

On 15th My 2012 we launched a campaign requesting Government Funding for research into the cause of CDH. We require 100,000 signatures by this time next year to get this request before the House Of Commons; this is a big call and a lot of signatures. Can we do this? We are certainly going to try!! This will also raise tons of awareness. Please share this epetition on facebook, twitter and as many other social networking sites as you can. You can also email it to people to sign. To find out more...

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CDH UK Research Fund

Here at CDH UK we know how important it is to find the cause (or causes), prevention and improved treatment and management of Congenital Diaphragmatic Hernia and is one of the main aims and objectives of our charity. Research and study in most cases can cost many hundreds of thousands of pounds and it is therefore extremely important for us to build on our Research Fund so that we are able to contribute to the studies/research programmes that we feel are worthwhile. Our current research fund...

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