CDH UK

World Birth Defects Day 2020

Written on March 2, 2020. Posted in Events, General.

As partners of the World Birth Defects Day initiative we ask our end users and supporters to take part in raising awareness of this important initiative on the 3rd March. You can share the World Birth Defects Day logo to promote the day and join the World Birth Defects Day Movement by taking part in this year’s campaign ‘I CARE…….’ a template can be downloaded here Template for the I CARE campaign hashtags are #WorldBDDay #WBDD2020 #ManyBirthDefects1Voice

Coronovirus (Covid-19)

Written on February 28, 2020. Posted in General, Medical News.

Many of you may be worried about the Novel (Covid-19) Coronavirus situation and you may be seeking some advice, particularly if you or your child have any complications or ongoing medical issues. CDH UK has not to date received any specific advice relating to the CDH population and we advise you to keep up to date with advice according to the Department for Health for the country that you live in or are currently visiting. We will of course update should we receive any different advice. PLEASE...

CDH UK makes a significant contribution at the 66th BAPS Congress

Written on July 10, 2019. Posted in General, Medical News.

CDH UK has again attended the annual British Association of Paediatric Surgeons Congress, but both as an exhibitor and speaker this year. The event was a huge success and CDH UK made a great impact following two insightful presentations at the education day at the start of Congress and at the Scientific meeting at the end of congress. Beverley our Chair and Research & Development Officer spoke to predominantly trainees at the education day about CDH UK and it’s work and how Healthcare...

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

Written on May 31, 2019. Posted in Events, General, Uncategorized.

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...

AGM 2019

Written on April 25, 2019. Posted in Events, General.

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...

Run for Research and grab yourself a place in the Virgin Asics 10K!

Written on April 4, 2019. Posted in Events.

Thank You for checking out our events and for supporting our really important cause! and for supporting our really important cause! CDH UK has partnered with the Virgin Asics 10K event taking place in London on 21st July and we have FIVE charity places. If you are interested in joining the team and grabbing a place then please contact fundraising@cdhuk.org.uk for further details! HURRY PLACES WON’T HANG AROUND FOR LONG! https://uk.virginsport.com/event/asi...

World Birth Defects Day!

Written on March 1, 2019. Posted in Medical News.

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? We would...

European Reference Networks (ERNs) What they are and how they work.

Written on January 25, 2019. Posted in General, Medical News, Research, Uncategorized.

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...

Rare Disease Day 2019

Written on January 24, 2019. Posted in Events, General.

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...