BENEFITING: Team Telomere
Dyskeratosis Congenita (DC) is a devastating and extremely rare disease with severe, and often fatal, symptoms. It attacks people of any age, but occurs more frequently in children, resulting in an average mortality age of 16. It can affect almost every system in the body, causing bone marrow failure, pulmonary fibrosis, liver problems, susceptibility to various cancers, and a host of other serious issues. Its symptoms often masquerade as other illnesses, and because it is so rare, most doctors have never seen a case; this often leads to misdiagnosis and mistreatment, with sometimes disastrous consequences. For this reason, Dyskeratosis Congenita Outreach - an all-volunteer nonprofit organization formed to support patients and families with DC and educate the medical community - has undertaken the creation of a Clinical Guideline for the diagnosis and treatment and management of the disease. This document will be written by the foremost medical experts on DC in every area of specialization, and both published in hard-copy form and made available on our website as a resource for doctors and patients alike all over the world. We already have the talent lined up, what we need now is your help. Because DC is so rare, the pool of affected families from which we draw donations is very small, so we must rely on the kindness and generosity of people like you to help make this life-saving endeavor a reality. Thanks and bless you for your support.