Get in touch

We understand that when you or someone you love gets diagnosed with a rare disease like DC, it can be a confusing and worrying time. Or maybe you’ve known your diagnosis for a while, but want to know more. Whatever your situation, we understand and we’re here to help.

For general enquiries about DC Action and our work, please get in touch via

If you want to find out more about dyskeratosis congenita as a condition, or talk about your own or your family’s experience, contact our Medical Advisor, Dr Hilary Longhurst, via