Through our work, we aim to educate the public, medical professionals and other interested parties about Dyskeratosis Congenita and other telomere repair defects. Our activities include:

1) Raising awareness of Dyskeratosis Congenita with the public, medical professionals, research groups, pharmaceutical companies and other relevant parties.

2) Providing updates around relevant research and publications about the disease.

3) Linking to relevant treatment guidelines for DC patients and their families.

4) Providing fact sheets explaining the guidelines relevant to each aspect of the disease.

5) Reviewing medical literature, and providing brief summaries (please subscribe to our newsletter).

For more information about our educational activities, please contact us at

Cheat sheets

Do you ever struggle to explain dyskeratosis congenita (DC) to your doctors or specialists? DC Action has created ‘Cheat Sheets’: downloadable, printable A4 double-sided sheets with all the DC basics and references for further reading. Print them out and take them along next time you need to see a doctor! Thanks to everyone who helped us to develop the Cheat Sheets and to our expert reviewers. We will keep them updated. Do send us your comments.

Whole body cheat sheet: Whole Body Jan 20.pdf

Oral cheat sheet: Oral Jan 20

Eyes cheat sheet: Eyes Jan 20

Haematology cheat sheet: Haematology Jan 20

Liver cheat sheet: Liver Jan 20

Respiratory cheat sheet: Respiratory Jan 20

Dermatology cheat sheet: Dermatology Jan 20

GP Adult cheat sheet: GP_Adult Jan 20

GP Child cheat sheet: GP_Child Jan 20

Disclaimer: The materials contained on this website are provided for general information and guidance purposes only, and do not constitute advice in their own right. For medical advice, please contact your doctor.