Letter: Rare Disease Day designed to show patients, families need support
Feb. 28 has been designated as Rare Disease Day by the National Organization of Rare Disorders. Living with a rare disease can be challenging, heartbreaking and especially lonely.
A rare disease can have a broad diversity of disorders and symptoms, which vary from patient to patient, suffering from the same disease. Some have common symptoms that hide the underlying rare disease, which leads to misdiagnosis and delayed treatment, as it becomes life-threatening. Dyskeratosis Congenita is one of these diseases.
Patients and their families need your support, both emotionally and financially. Please check out www.rarediseaseday.org and www.dcoutreach.org .