If you’re living with a rare condition, whether you have it yourself or you’re supporting a close family member, you will likely be dealing with a lot of stress and uncertainty. Brought to you as part of the Better Together Alliance Project, this course is designed to help you to deal with the emotional burden of living with these conditions.  Event[…]

Demistifying the use of patient health data in research:   Join this virtual meeting on Tues 5 December 6-7.30pm.  The UK National Health Service provides lifelong health care for almost everyone in the country and the anonymous data from the NHS has proved uniquely powerful in helping the world find answers to some of the[…]

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[…]