Are your needs being met? The US National Cancer Institute is carrying out a worldwide survey of patients and carers looking after someone with dyskeratosis congenita or a related telomere biology disorder.
If you are 18 years or older, please take 20 minutes to fill in the survey, at ncidccpssurveys.gov1.qualtr...
. You can also choose to take part in a follow-up interview but this is not essential.
Further information is available at
clinicaltrials.gov/ct2/show...
Or contact the researchers camella.rising@nih.gov
or DC Action for independent advice.
