Welcome!

Dyskeratosis Congenita Outreach is a community of people linked by similar stories. Our lives are a patchwork of challenge and triumph, joy and heartbreak. Through it all, we remain hopeful knowing that we are not alone. As each day passes, more about our condition is known and with that knowledge the promise of better treatment. On our website you can find doctors who specialize in caring for us and our family members; people with shared experiences who want to listen; and the latest in potential breakthroughs in research and therapy. If you’re recently diagnosed, you can find basic facts as well information on registering for a national database of families like yours that’s maintained by the National Institute of Health. If you’d like to meet other patients, join us during a support group meeting. We’d love to have you! We are here to help-– you are not alone.