June is CDH Awareness Month – Join in June 4 CDH!

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...

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AGM 2019

This year’s AGM will be held from 1pm on Sunday 19th May 2019 at: The Field Head Hotel,  Markfield Lane, Markfield Leicester, LE679PS. 01530245454 GET DIRECTIONS https://www.google.com/maps/dir/?api=1&destination=Fieldhead+Hotel%2CMarkfield+Lane%2CMarkfield%2CUnited+Kingdom%2CLE67+9PS This is a public meeting open to all interested in the activities of the charity. If you are interested in attending the meeting could you please email events@c...

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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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Rare Disease Day 2019

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...

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ERNICA website goes live!

The European Network for Rare and Inherited Congenital Abnormalities (ERNICA) website has now gone live and we would like your feedback on it to ensure that it can continue to develop and improve for patients as well as Medics. You can read all about ERNICA and find out about CDH UK’s involvement as a founding  patient organisation and ePAG on the patient involvement page. You can email committee@cdhuk.org.uk with your suggestions or comments on the website itself. https://ern-ernica....

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JOG 4 JUNE 4 CDH! A Marathon In A Month!

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,...

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AGM 2018

PUBLIC NOTICE Our Annual General Meeting (AGM) will be held on Sunday 8th April at 12pm at: The Fieldhouse Hotel Markfield Lane Leicester LE67 9PS Please address any questions to the Committee by emailing committee@cdhuk.org.uk 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.

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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 Awareness Month 2017!

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...

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