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About CDH UK

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 encouraging and funding research.

We consist of patients, families, friends and medical professionals affected by Congenital Diaphragmatic Hernia (CDH). and run by a team of passionate expert patients and family members who are dedicated to supporting you and furthering research.

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 and medical professionals to improve care, treatments and to support and advance research.

Where it all began

CDH UK was founded by Husband and Wife Brenda and Kevin Lane in the 1990’s and registered with the Charity Commission in 2004 and the OSCR in 2010. It was initially formed as a small support group to provide parents and families faced with a Congenital Diaphragmatic Hernia (CDH) diagnosis with a friendly and informal support network of other parents and families who had endured similar experiences, and who could offer emotional support and share experiences with each other.

How we have evolved

Today CDH UK has grown into an established registered charity that also works and collaborates internationally.  CDH UK still offer the same friendly, informal support as it did all those years ago, but now has many more services and resources to offer and 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 to childhood and beyond, through different types of media such as the internet and written publications.

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 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.

We also liaise with the medical profession to keep 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 and ensuring that it is meeting it’s aims and goals and who regularly participate and support our fundraising events. We would like you to know who these dedicated people are:

  • Beverley Power – Trustee & Chairperson
  • Katie Chapman – Vice -Secretary
  • Kerrie Laird – Treasurer
  • Brenda Lane – Trustee
  • Donna Fahey – Trustee
  • Rachel Gallagher
  • Sue Bartlett

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.

CDH UK is a registered charity in England and Wales (no. 1106065) and Scotland (no. SC042410) | Privacy Policy | Disclaimer | Glossary