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...
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...
28th June is CDH Awareness Day and this year we have interviews with families and patients taking place up and down the country to make a real impact on raising awareness. This is the largest radio campaign ever undertaken for CDH.
We will hear from one of our Patron’s Professor Paolo De Coppi from The Institute for Child Health and Great Ormond Street Hospital, along with our Secretary & Trustee Beverley Power live from the London Studio and broadcasting out to BBC Radio Three Counties...
CDH UK is pleased to announce the start of a new international alliance to bring together diaphragmatic and other abdominal wall anomalies organisations and patient representatives under the umbrella organisation called IDEA. IDEA is the acronym for International Diaphragmatic Hernia, Eventration and Abdominal wall Anomalies Alliance. The conditions covered are:
Congenital Diaphragmatic Hernia
Acquired or incidental Diaphragmatic Hernia
Eventration of the Diaphragm
Jason Hills will be running 60 miles from London to Southend in August.There will be 20 people on bikes also . Details of how to sponsor this event will follow shortly
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...
This year our Annual General Meeting (AGM) will be held on Sunday 7th May commencing at 12pm at the following venue:
The Fieldhead Hotel
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...
We recently partnered with Mediaplanet UK on the Rare Diseases Campaign in The Guardian newspaper and online at http://bit.ly/2lF2pma
Readmotivating insight from thought leaders and learn more from patient stories on rare diseases.
Out 28th February 2017 Rare Disease Day!
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...
CDH UK Annual General Meeting Sunday 8th May at 1 pm Venue The Hilton Nottingham Address: Milton Street, Nottingham NG1 3PZ, England Please email firstname.lastname@example.org for further details