About CDH UK

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We like to think of CDH UK as a modern charity made up of experts providing complimentary care to patients and their families in the form of information, emotional and practical support and by conducting, encouraging and funding research.

We are an independent leading CDH organisation consisting of patients, families, friends and medical professionals affected by Congenital Diaphragmatic Hernia (CDH) and the very first to be registered and based in the UK. We currently have offices in the North and South of England and a great team of Trustees and volunteers up and down the UK. We also work internationally on research projects and through official networks helping to mentor others to provide support and resources in their own nations and to encourage meaningful collaborations.

We are run by a team of passionate expert patients and family members who are dedicated to supporting you and furthering research. We believe in patient centricity and an holistic approach to care, which means supporting putting you at the centre of your care and treating you as whole person.

Our website aims to provide support, information and advice on CDH by sharing experiences, providing news and information, raising awareness and working together with families, medical professionals and other organisations to improve care, treatments and to support and advance research. You can read our impact statements here.

Where it all began

CDH UK was founded by Husband and Wife Brenda and Kevin Lane when they found themselves feeling alone and isolated when their child was born with Congenital Diaphragmatic Hernia in 1994. They could not find any formal support in the UK and so decided to reach out to other families to form a small support network to offer each other informal and friendly support by telephone and email. They met with other families in person by organising small meet ups and soon realised that they had a desire and vision to create a formal support service. With the help of a donation from a local UK association they registered their charitable work with the Charity Commission in 2004 with a small committee of UK families, finally realising their vision of providing families with support by becoming the first CDH Charity in the UK. In 2009 with new team members and a renewed passion, the charity decided to consult with their end users, various stakeholders and industry specialists on how to improve services and resources, to enable the charity to reach out to even more families and healthcare professionals. With determination and hard work this new team rebranded and repositioned the charity with a plan to take their vision even further, in order to make an even bigger impact on the lives and outcomes for patients and families affected by CDH. This was a success story that went far beyond the Lane’s initial vision of offering emotional support and sharing experiences. In 2010 the charity was also registered with the OSCR.

How we have evolved

Today CDH UK has grown into an established and leading registered charity that also works and collaborates internationally. CDH UK still offers the same friendly, informal support as it did all those years ago, but now has many more services and resources to offer and a list of accomplishments that have made a genuine difference to improving outcomes. It offers information and advice to patients, families, Clinicians and other organisations on CDH (including eventration) from diagnosis and throughout the Patient Journey, through different types of media such as the internet and written publications and many other services and resources also available to Clinicians and other organisations, which can be found here on our website.

Our aims

To support patients, families and Clinicians as effectively as possible
To offer information, advice and news on all aspects of CDH (including eventration)
To raise awareness of CDH and to educate the general public and medical profession
To contribute where possible, and further study and research into better management and treatment of CDH and to assist in finding the cause and prevention of CDH

We carry out many different types of fundraising events to raise funds to enable us to continue to improve our sources of information and to contribute to worthwhile study and research programmes with the aim of finding better treatments and management of CDH, and of course to hopefully one day assist in finding a cure and possible prevention of CDH.

We also have our own Research Fund and to date we have funded and are funding some exciting research projects and researchers.

We hold an annual ‘get togethers’ to enable parents, families, friends and Clinicians to meet others in similar situations and we try to arrange these at different locations each year to offer fair geographical accessibility. These are normally advertised on our website and social media.

We also liaise with the medical profession to keep us and them up to date with news and information and to organise seminars and conferences when and where we can.

Our Management Team

Our Charity is governed by a volunteer Executive Committee who are passionate about CDH UK it’s patients and families and who are responsible for the day to day running of the Charity, ensuring that it is meeting it’s aims and goals and in line with it’s constitution. Our Committee also regularly participate in and support our fundraising events. We would like you to know who these dedicated people are:

Beverley Power – Trustee & Chairperson
Katie Chapman – Secretary
Brenda Lane – Trustee
Donna Fahey – Trustee
Rachel Richmond
Sarah Hill
Jasmen Sze

If you are interested in joining our Committee then please contact us!

In addition to our Executive Committee we have many people who help out as volunteers in other important areas such as:

Fundraising
Administration
Focus and Advisory groups
Hosting get-togethers
Counselling
Attending hospital information days
Raising awareness of CDH

If you would like to help in any way see our support us for further information.

Awareness

We raise CDH awareness all year round but during the official awareness month of June we arrange campaigns and fundraising to raise the profile of Congenital Diaphragmatic Hernia and the work of CDH UK and other organisations and agencies who support CDH patients and families. We chose June because it was the month when CDH support became official and was offered to anyone worldwide and 28th June is CDH Awareness Day because that is the actual day when support was legally officiated in 2004. We felt that this was something to celebrate and promote. We use the official CDH symbol and colours to promote awareness (which form part of our charity logo) because it is meaningful and like CDH it is unique! The symbol contains the elements of CDH as described by patients, families and medics that includes:

diaphragm
Lungs
Heart
Herniated viscera

It also symbolises support and love in it’s shape!

You can purchase official CDH merchandise through our website shop here CDH UK Shop

Visit our website news section and our social media accounts to find out about our awareness campaigns and themes

Download our CDH Information Booklet