Through our work, we aim to educate the public, medical professionals and other interested parties about Dyskeratosis Congenita and other Telomere Biology Disorders.

Our activities include:

1) Raising awareness of Dyskeratosis Congenita and Telomere Biology Disorders 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 those affected 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.

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

Cheat sheets

Do you ever struggle to explain Dyskeratosis Congenita (DC) or a Telomere Biology Disorder 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 Aug 2023

Oral cheat sheet: Oral Oct 2023

Eyes cheat sheet: Eyes Aug 2023

Haematology cheat sheet: Haematology Aug 2023

Liver cheat sheet: Liver Aug 2023

Respiratory cheat sheet: Respiratory Oct 2023

Dermatology cheat sheet: Dermatology Aug 2023

GP Adult cheat sheet: GP Adult Sept 2023 

GP Child cheat sheet: GP Child Oct 2023

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.