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Christmas Newsletter 2017

CDH Newsletter

Click here to view our 2017 Christmas Newsletter.

Date: 21 Dec 2017 - 04:03 PM

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 ,


It is a privilege to announce and warmly invite you to join us in Liverpool for the 2017 International Congenital Diaphragmatic Hernia Workshop Meeting. 


The CDH meeting is being held as part of an event programme linking closely also with the Peter Paul Rickham Symposium which celebrates the life-time achievements of an eminent paediatric surgeon who was co-founder of the World’s 1st Neonatal Surgical Unit at Alder Hey Children’s Hospital in 1953.  A faculty of leading experts will deliver state-of-the-art lectures pertinent to clinical care and management of CDH ( prenatal /  postnatal / long term follow up ) including  the latest advances in the basic sciences / developmental lung biology of particular relevance to the clinician / investigator(s).   We invite Abstract submission(s) as free paper scientific sessions are a key feature included in the 2 day symposium timetable.


CDH Parent support groups are particularly invited to attend and contribute . We are delighted to announce that CDH UK will be joining us for the 1st International CDH Symposium to be held in the UK. 


Professor Paul Losty

On behalf of the local organising committee




Abstracts are welcome on every aspect of CDH which will be scored , evaluated and selected by the scientific committee. Free paper sessions / posters presentations will be timetabled in the meeting programme scheduled with faculty lectures.  


On behalf of the local organising committee, CDH UK and the CDH EURO CONSORTIUM

we therefore request you reserve the dates : November 14th – 16th 2017 in your diary and encourage your colleagues to submit abstracts.


Workshop fee : The CDH workshop fee - which includes lunches and refreshments -  ‘ early bird ‘ rate - £ 250  - payment details to follow.


Abstract Format  - Aims , Methods , Results ,  Conclusions – 350 words maximum.

Indicate submission preference  – Oral or poster presentation category  


Abstracts mail to :  .(JavaScript must be enabled to view this email address)


Deadline for abstract submission  -  July 30th  2017

Abstract acceptance will be announced -  August 31st  2017


Please note :  The Peter Paul Rickham Symposium is a full 1 day event conference being held on November 16th 2017. The clinical & scientific programme for the Rickham meeting will be finalised and announced in Summer 2017.  ( Registration delegate fee / Social evening event with PPR dinner is also available for this 1 day conference  ).  Details here to follow in future 2nd announcement(s). 


Those delegates registering and attending the CDH International Workshop - a 2 day scientific meeting ( November 14th and 15th  ) will have a special conference fee rate ( £ ) also included for the Rickham Symposium which immediately follows on November 16th 2017 ) – to be confirmed.


Professor Dick Tibboel – Sophia Children’s Hospital , Erasmus University Rotterdam , Netherlands will deliver the 2017 Peter Paul Rickham Guest Lecture.


Hotel arrangements :   A list of hotels / delegate rates (£)  will be provided


Enquiries and further information :


Moira Saphier – Executive PA

Institute of Child Health

Alder Hey Children’s Hospital , Liverpool , UK

 Email : .(JavaScript must be enabled to view this email address)

Tel : + 44-151-252-5250

For registration please click on the following link:



Date: 06 Sep 2017 - 12:20 PM

Lighting up The Blackpool Tower for CDH Awareness!

The Blackpool Tower will light up Blue with a Pink heart, which are our Charity Colours and that of the CDH symbol, to raise awareness of Congenital Diaphragmatic Hernia on CDH Awareness Day on 28th June.

We are very grateful to Merlin Entertainments Ltd for supporting us with this very important event in our annaul calendar. and we hope that you will visit The Blackpool Tower the next time you are there to say thank you.

If you are in Blackpool pop along to the tower and take some pictures then send them in to us via our Facebook page CDH UK or by emailing them to .(JavaScript must be enabled to view this email address)

Date: 28 Jun 2017 - 01:33 PM

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 media platforms. It also attracts new supporters and donations and can also attract major philanthropy, which all boosts our ability to support better, inform and educate better and to contribute to research. This also means collectively, better outcomes for patients and their families. Result. So please don’t think that changing your profile picture goes unnoticed or is futile……….it could lead to bigger things. Seriously. So together let’s make the month of June a huge success for all things CDH and raise the roof with awareness!

So what have we got planned?

Bake 4 Babies

We have been Baking 4 Babies for a few years now and have seen other charities and organisations follow suit. It is a fun, easy, family orientated, child friendly way to not only raise cakes, but awareness and funds too. We provide the pack, you provide the ingredients, the baking skills and the oven! You can then organise a traditional cake sale and sell your goodies from a stall at a school fair for example (or table in the office!), or you can take a box filled with goodies round to your family and friends and ask for donations in return for cakes or buns, or you could advertise on your facebook page and sell them to whoever will buy them! Try your local gym and cook up some healthy low sugar options……..Use your imagination and get family, friends and work colleagues involved. Raise a bun or two and a bob or two for CDH UK.

Bike 4 Babies

For the more active of you out there, we have a bike challenge……….again, use your imagination and get a few of you together and charge a participating fee or obtain sponsorship for a time trial, race or bike crawl…….do it in fancy dress to make it more fun. You can make it child, wheelchair and pet friendly by organising a safe route off road such as in a park, Sports track or private land (with permission of the owner of course) or you can set a real distance challenge and make it a coast to coast or town to town ride, What about a bike treasure hunt? Think out of the box…………go on get on your bike for babies!

Email .(JavaScript must be enabled to view this email address) for a pack

Social Media awareness – CDH Core Challenge

Want to be a top planker? Now’s your chance with our CDH Core Challenge………here’s how

Video yourself, or a group of you holding plank pose (see image below) for as long as you can and try do it against an interesting background………this could be your dog, landmark, artwork, a lovely garden, a group of friends or family…….it’s up to you to use your imagination and video skills! Please don’t cheat and edit the video! You must then post your video on social media using the hashtags #CDHCoreChallenge #CDHUK Get everyone involved and challenge them to it……..ask your favourite celebrity too!

Why core challenge?

Each year we try to focus on a certain aspect of CDH as well as the condition itself. CDH babies and children can often experience developmental delays such as sitting up, crawling and walking, some struggle to even lay on their tummy and can appear clumsy by falling over a lot. This is usually caused by a weak core caused by poor muscle tone and is partly the result of lack of neonatal flexing and contracting and long periods of hospitalisation. Our core is made up of a few muscles which includes the diaphragm. The diaphragm is defective in a CDH patient and so this also impacts on core development and strength. Our core allows us to be stable, keeps us aligned. It allows us to sit up and down, stand up and lay down, play sports, it assists in breathing and helps to expel substances from our body such as poo! It also enables us to push, pull and hold things. Because many CDH patients struggle with their core, we wanted to demonstrate how its strength is important and to draw your attention to it. We also wanted to draw your attention to your lungs and breath, both of which are also affected by CDH, hence the core challenge and plank pose. The plank pose requires good form and core strength and to do it well, you should try not to hold your breath in the pose, but instead focus on your breath and breathe in and out slowly and steadily. Imagine if you had such poor core strength and lung function that you struggled to just sit up never mind try plank? There are many other complications associated with CDH of course, but this is our 2017 focus for the challenge. Please join in and help make this go viral! We will be sharing and tweeting you videos and at the end of June we will see who gets to use the hashtag #TopPlanker

 It starts today………so on your marks, get set, PLANK!!

DISCLAIMER: CDH UK will not be held liable in any way whatsoever and assumes no claims or damages for any accident, injury or mishap by any individual undertaking this voluntary challenge. All risks are undertaken by the individual participant. We recommend consulting your Doctor before undertaking any type of strenuous or new form of exercise. You should be in good physical health to undertake challenges of a physical nature. Children should be supervised by an adult at all times. As with any physical pose care should be taken to carry it our correctly to avoid injury and we have provided a diagram to assist with this which we suggest to study prior to under taking the challenge. We also advise carrying out a warm up exercise first.

Forget Me Not

Each year on CDH Awareness Day we pay tribute to the ones whose lives were cut short by CDH and to let their families know that their loved ones are not forgotten and we are thinking of them. This year we are asking you to plant some forget me not seeds in their memory and then ask family and friends to make a small donation to CDH UK in their memory. You can plant the seeds wherever you like; in your garden, local woodland, in a nature park. These beautiful delicate little flowers come in a variety that comes in our charity colours of pink and blue, so once you have planted them and they flower, please take some pictures and send them in. You can purchase seeds at any good garden centre and online in a pink & blue mix variety.


Every year we start a Thunderclap in June that finishes on CDH Awareness Day (28th June) with a mass social media post to raise awareness of CDH and we shall post the link on our facebook page shortly. Please share it around as much as you can to gain as much support as possible.

Pledge For Patients

We have decided to use CDH awareness month to help our families and our friends at Rare Disease UK, Genetic Alliance and SWAN UK to get local parliamentary candidates to sign up to pledge their support for Rare Diseases to ensure a voice for patients in the next newly elected parliament. You can find our more information and obtain a letter template on the Pledge For Patients website and use this link to direct your candidate to the pledge form

We would also encourage you to use the official awareness images that can be found on our facebook page to help you raise awareness and to share stories of experiences and fundraising efforts with us during June. If we don’t tell our stories, nobody will understand why awareness is so important. Awareness today means educated tomorrow.

Happy awareness raising CDHeroes!



Date: 01 Jun 2017 - 09:40 AM


This year our Annual General Meeting (AGM) will be held on Sunday 7th May commencing at 12pm at the following venue:

The Fieldhead Hotel

Markfield Lane


LE67 9PS

This meeting is open to the general public and everyone is welcome. The purpose of the meeting is to comply with legislation, to give up to date reports on the charity's activities and financial position and to vote on important matters and elect any new governing members for the coming year. This is also an opportunity for you to ask questions. We request that any questions are sent to the charity two weeks in advance of the meeting so that we can provide a complete answer on the day and address any questions in your absence. Please email questions to .(JavaScript must be enabled to view this email address) or post to: 


The Denes

Lynn Rd

Tilney All Saints

King's Lynn

PE34 4RT

Date: 12 Apr 2017 - 10:35 AM

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 hernia.- Dr Neil Patel - Royal Hospital for Children - Glasgow

COngenital Diaphragmatic hernia: Inhaled NO vs intravenous Sildenafil (CODINOS) trial - Professor Dick Tibboel - Sofia Children's Hospital, Rotterdam

Prenatal maternal sildenafil administration to prevent pulmonary hypertension due to congenital diaphragmatic hernia: final preclinical steps to a clinical trial - Professor Jan Deprest - Leuven, Belgium

The funding of this research has been made possible by the CDH UK Research Fund, which is the first of its kind for CDH. The fund is raised through the kind donations and fundraising carried out by our supporters and the general public. This is an ongoing fund to help improve outcomes for Congenital Diaphragmatic Hernia. Anyone wishing to know more about the CDH UK Research Fund, the research we are funding, or if you are interested in applying for funding, please contact .(JavaScript must be enabled to view this email address)

We would like to thank everyone involved and we are excited to be a part of this exciting research for CDH.



Date: 24 Mar 2017 - 03:26 PM

CDH UK to feature in The Guardian Newspaper Rare Disease Campaign!

We recently partnered with Mediaplanet UK on the Rare Diseases Campaign in The Guardian newspaper and online at

Readmotivating insight from thought leaders and learn more from patient stories on rare diseases.

Out 28th February 2017 Rare Disease Day!

Date: 27 Feb 2017 - 05:18 PM

June is CDH Awareness Month! Join in!

June is CDH Awareness month and we need your help to raise extra awareness, so that mean’s time to dig out your t-shirts, polish your badges, put on your wristbands, make sure the CDH symbol is on all your social media profile pictures and your car stickers are firmly in your windows!! Share the CDH UK awareness video that you will find on our website and facebook page….Oh and remember to try tell at LEAST one person on each day during June about CDH, because the more people that are aware of Congenital Diaphragmatic Hernia, the more support we gain and the more changes we can make:

Here are our main awareness month events, that we hope you will take part in to spread the word:


Our annual Thunderclap starts on 1st June and finishes on CDH Awareness Day on 28th June with what we hope will be a HUGE Thunderclap message about CDH. This is all about getting supporters to sign up to support the thunderclap and once the target number of people have shown their support, the awareness message goes out on twitter! This is a great way to raise awareness and the link will be posted here and on our facebook and twitter feeds on 1st June.

World Record Attempt Skydive

On the 11th of June CDH UK will be taking part in a World Record attempt tandem skydive, which we hope will be covered in the media and will attract lots of attention to CDH. We are hoping to have a stand at each of the following airfields; Brigg, Nottingham, Peterborough, Swindon, Salisbury and it would be great to see some of you joining us to cheer the CDH UK skydivers on! If you would like to sponsors any of our daredevils, please head over to the Do It For Charity website and search CDH UK or alternatively search Virgin Money Giving.

Dare To Be Aware!

New for 2016 is our Dare To Be Aware challenge on Social Media. We all know how things can go viral on Social Media, so we hope that you will join in with this year’s fun………the worst that can happen is we raise a whole lot of awareness! So here’s the plan………….

Starting on the 1st June, you choose THREE victims to Dare To Be Aware! Once you have decided who they will be you post this message on your social media timeline and tag them in the post:

Dare To Be Aware of CDH? The following will not harm you in any way, but Congenital Diaphragmatic Hernia (CDH) harms lots of babies worldwide, in 50% of cases it is fatal. To find out what it is visit CDH UK. Please help to raise awareness by choosing one of the following ‘Dares’ that you must film stating ‘I dare to be aware of CDH’ before carrying out the dare and then post on Social media along with this post (copied in its entirety)  #CDH #awareness #DareToBeAware and then tag three new victims:

1.       Kiss someone on the lips whilst staring them in the eye without laughing for at least 30 seconds

2.       Impersonate someone

3.       Tell your best joke (try keep it clean!)


Bake 4 Babies

Back for a fifth consecutive year is our ever popular Bake 4 Babies! Organise a cake sale, get your friends, family, colleagues, whoever involved! Get raising those cakes and help raise awareness and funds too! Contact .(JavaScript must be enabled to view this email address) for a free pack.

Drawing attention to CDH

This is one for the kids! We are asking children to draw pictures of people who have helped them through their CDH journey……..this could be a Doctor, Nurse, Teacher, Dinner lady, Mum, Dad, Sister, Brother…….even CDH UK! If you are a bereaved family then siblings can join in. Once they have drawn the picture please add their name, age and who is in the picture, #CDH #cdhuk then take a good quality picture and send it by private message only to our facebook page. Also don’t forget share them on your own pages.

Name our new charity mascots

Thank you for all of the wonderful name suggestions for our new Butterfly mascots. Please vote for your favourite names during June by looking out for the voting link………names to be announced on CDH Awareness Day!

Share A Story

Please send in your stories/experiences for us to share on our facebook page throughout June to .(JavaScript must be enabled to view this email address) and please include a picture if possible.

In addition to the above events, we have other in aid of events going on around the country that you may like to attend and support. Here are a couple to be going on with:

Boxing 4 Babies

Kennedy Power will be taking part in a Boxing match at the Bradford Hotel, Bradford, West Yorkshire on Saturday 4th June to raise awareness and funds for CDH UK. You can sponsor Kennedy here:

Phoebe’s Fun Day

Back again for another year, Kate Dulson has organised this fantastic family event to raise awareness and funds for CDH UK. Why not pop along and show your support and of course enjoy the fun!

Saturday 11th June 11:00 am

The Fox Inn

Bridgnorth Rd




Date: 27 May 2016 - 11:21 AM

AGM 2016

CDH UK Annual General Meeting Sunday 8th May at 1 pm Venue The Hilton Nottingham Address: Milton Street, Nottingham NG1 3PZ, England Please email .(JavaScript must be enabled to view this email address) for further details

Date: 17 Apr 2016 - 09:24 AM

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 can email .(JavaScript must be enabled to view this email address) for further details.

Date: 04 Apr 2016 - 03:11 PM

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