Do you have a child or young person in your life who has cardiomyopathy?

11th October 2016

If so we’d like to hear from you.

Having a child or young person with a diagnosis of cardiomyopathy can be a worrying or challenging time. Families may be looking for information, answers and support, and sharing experiences with other people can be helpful.

If you are a parent or family member of a child or young person with cardiomyopathy you can help us to improve our booklet ‘Cardiomyopathy in children and young people – a guide for families’. We’d like to understand what information you wanted, what you found helpful, and how the condition impacted them and the family, when your child was diagnosed.

These questionnaires are anonymous and we will not ask you for your personal details. We will use the results of this survey to inform our future work, and may publish the results, for example on our website. You will be given the option to give us permission to use the information you provide as a quote, and you can chose to allow this or not.

To share your experiences:*

*If you would like a paper copy of the survey to complete instead, please call us on 01494 791224 and we can send them to you in the post.


Thank you for sharing your experiences with us. Your responses will help us to understand more about the experience of people with cardiomyopathy, and to develop services to support people in the future.

If you would like more information about cardiomyopathy, please visit our information section

Go here if you want to more about how we can help you

If taking this survey has brought up any issues for you, and you would like to talk to someone, please feel free to contact our helpline

Or you can contact other people through our closed Facebook group or online forum