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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 .(JavaScript must be enabled to view this email address) with your suggestions or comments on the website itself.

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Date: 06 Aug 2018 - 02:33 PM

Our GDPR Statement

On 25th May 2018 a new General Data Protection Regulation (GDPR) came into force. This is our statement.

Date: 02 Aug 2018 - 01:29 PM

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, run around that, walk or jog around your local park or playing fields, run on a main route, or on a treadmill, it really is up to you how, when and where you do it as long as you do it during June and you provide us with evidence that you have completed a Marathon in A Month! It is really simple to participate in and all you need to do is to pay your £15 registration fee ensure you have suitable clothing and footwear for walking, jogging or running in and access to a health app for a PC or mobile to record miles and provide evidence. It would be great especially if completing the Marathon outdoors if you could help raise CDH awareness by wearing Pink and blue or purchase a t-shirt or running vest. If you want to raise more funds for CDH UK, then you will also be sent a sponsor form template upon registation and away you go! You can also send in pictures of yourself clocking up those miles, to raise awareness and inspire others or post them on your social media accounts using the hashtags #Jog4June4CDH and #MarathonInAMonth At the end of June submit your evidence to .(JavaScript must be enabled to view this email address) along with your sponsor forms and details of funds raised. You will receive a medal and certificate once everything has been received and we can be sure you have completed your 26 miles between the 1st and 30th of June. For the person who completes the Marathon in the shortest time, there will be a winners trophy and for the person raising the most amount of money there will be a gold badge (not real gold sadly!) and of course the other benefit is that you will have helped to keep yourself active during June. Find out everything you need to know about CDH by reading our 'about CDH' section and make your Jog 4 June 4 CDH a really successful awareness event!

 

To register and set up your own online fundraising page click the link below:

https://cdhuk.charitycheckout.co.uk/cf/JOG-4-JUNE-4-CDH

P.S If you are a school that would like to take part, then please contact us about our Jog 4 Juniors!

Date: 14 May 2018 - 12:05 PM

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

 

Date: 18 Mar 2018 - 11:41 AM

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

 

Instructions

 

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: http://payments.liv.ac.uk/conferences-and-events/events-at-liverpool/institute-of-translational-medicine/congenital-diaphragmatic-hernia-international-symposium-and-peter-paul-rickham-symposium-nov-2017

 

 

Date: 06 Sep 2017 - 12:20 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.

Thunderclap

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 http://geneticalliance.us8.list-manage.com/track/click?u=144770e74471b2695c19422dc&id=c9c14b8cbf&e=66b4871d41

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

CDH UK AGM 2017

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

Markfield

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: 

CDH UK

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

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.

http://www.sparks.org.uk/researchers/apply-for-funds/apply-for-a-grant-congenital-diaphragmatic-hernia/

Date: 04 Apr 2016 - 03:11 PM

Do you want to be an official Record Breaker? Then read on….........

CDH awareness month is June and this year we thought we would go one better than shouting from the roof tops...........we thought you might like to aim a bit higher in fact around 14,000 feet higher, by jumping out of a plane to take part in our Tandem Skydive world record attempt on the 11th of June in partnership with our organisers Skyline events. This is such an amazing opportunity to do something that maybe you have always wanted to do and to raise lots of CDH awareness and funds for our cause AND be in the world record books!!!

To register and obtain an information pack, please email .(JavaScript must be enabled to view this email address) without delay! Remember places won't be avaialble for long! 

You can also register via this link:

https://www.skylineregistrations.co.uk/parachuting/booking.aspx?clientid=62165&type=block&v=3515

Date: 08 Dec 2015 - 03:33 PM

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