DC Action is always on the lookout for opportunities to get involved in research studies that may build our understanding of Dyskeratosis Congenita and associated conditions, and lead to better outcomes for patients.

Currently we are involved in DEMISTIFI and The Better Together Consortium.

The DEMISTIFI Study (DEfining MechanIsms Shared across mulTI-organ FIbrosis to prevent the development of long-term multi-morbidity) is led by Professor Gisli Jenkins and a team of world-leading scientists. Their research, funded by UK Research and Innovation, aims to understand the causes of fibrosis, including the genetics of disease and the how the way we live our lives might affect our risk of fibrosis. The hope is to identify possible new treatments and lifestyle changes (such weight loss and exercise) that could prevent or treat scarring and develop new technologies to monitor fibrotic diseases more effectively.

For more information see

This is a really exciting and innovative project because it doesn’t just focus on a single organ affected by fibrosis, but will be combining the knowledge, understanding and expertise across multiple fibrotic diseases.