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Team Telomere

Together We Are Stronger Supporting families worldwide in their battle with Dyskeratosis Congenita and related Telomere Biology Disorders who often face multiple complex illnesses such as bone marrow failure, lung fibrosis, cancer, and many other challenges.

Tax ID 26-3776187


Dyskeratosis Congenita is a devastating and extremely rare genetically inherited disease. It can affect people of any age, but more often attacks children, resulting in an average patient mortality age of 16. It can wreak havoc on almost any system in the body, causing bone marrow failure, pulmonary fibrosis, and liver problems, susceptibility to various cancers, and a host of other symptoms. Because it is so rare, most doctors have never seen a case, often resulting in misdiagnosis and mistreatment, with disastrous consequences. For similar reasons, most patients are unlikely ever to meet anyone else with the condition, and experience feelings of helplessness and isolation. That's where we come in. Dyskeratosis Congenita Outreach was formed at the urging of the National Institutes of Health to provide information and support to patients and families stricken with the disease. We connect families with each other, enable communication between patients and DC-experienced doctors, and educate the medical community in the hope of improving the accuracy of diagnosis and efficacy of treatment. The rarity of the disease also makes fundraising very difficult, as we have a tiny pool of affected families from which to draw, and most of those are financially strapped by the expenses of fighting the disease. We need your help!