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 https://ncidccpssurveys.gov1.qualtrics.com/jfe/form/SV_3NOqvDAY7ZgDRCm
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 firstname.lastname@example.org
Please also feel free to contact our medical director, Dr Hilary Longhurst (email@example.com), if you would like any further advice about the survey.