US National Cancer Institute survey for DC patients and carers

Are your needs as a DC patient or carer being met? The US National Cancer Institute is carrying out a worldwide survey of patients and carers looking after someone with dyskeratosis congenital or a related telomere biology disorder.

If you are 18 years or older, please take 20 minutes to fill in the survey, at

You can also choose to take part in a follow-up interview but this is not essential.

Further information is available at

Or you can contact the researchers at

Please also feel free to contact our medical director, Dr Hilary Longhurst (, if you would like any further advice about the survey.