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


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.