Rare Voices Survey Report

Thank you to all the DC Action members who took part in this survey to describe your experience of living with dyskeratosis congenita, along with members of our sister charities, all of whom support families affected by bone marrow failure (a common complication of dyskeratosis congenita).  

You can read the report here. It’s our intention to use this information to lobby for improved diagnosis and care for people living with rare diseases.