What is DC?
Dyskeratosis Congenita is a rare genetic form of bone marrow failure, the inability of the marrow to produce sufficient blood cells. To date, 18 mutations of DC have been identified and is caused by aberrant telomere biology.
DC is a genetic disease that:
Affects less than 1 in 1,000,000 people
Less than 500 people have been diagnosed worldwide
Males are affected 3 to 1
Many patients are at very high risk for leukemias and many cancers
Most patients succumb to bone marrow failure and/or pulmonary fibrosis
Most patients do not live past 16 and on the outside 30 years of age
A message from Suneet Agarwal
Team Telomere is an international non-profit organization, serving families affected by Telomere Biology Disorders, including dyskeratosis congenita. Telomere Biology Disorders are a complex set of illnesses that can lead to medical complications including bone marrow failure, lung fibrosis, liver disease, cancer, and many other challenges.
Team Telomere’s vision is to see a world where every person affected by Telomere Biology Disorders – including the affected individuals, caregivers, researchers, and clinicians – has accessible care, community, and resources, with the goal of changing the course of this disease.
In line with our vision and mission, Team Telomere has given away thousands of clinical guidelines, hundreds of care packages to those around the globe, scholarships to support affected individuals pursuing higher education, and grants to fund the needs of families as they navigate complex medical treatment.
Ultimately, our commitment, passion, and drive to our Telomere Biology Disorder community is maintained by our mantra “You are never alone.”
You can learn more about Team Telomere at http://teamtelomere.org