US National Cancer Institute survey for DC patients and carers

Posted on March 12, 2022March 12, 2022 by admin

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[…]

Gene therapy study starts for bone marrow failure in dyskeratosis congenita (DC)

Posted on March 12, 2022March 12, 2022 by admin

Dr Kasiani Myers, from Cincinnati has treated the first patient with DC-related bone marrow failure, with an experimental new gene therapy (EXG34217). The trial is in its very early, safety testing stages but we hope that the treatment will help treat bone marrow failure. The trial is open to adults (18 or older) with DC[…]