Tomorrow is Rare Disease Day, observed globally on the last day of February in order to raise awareness of rare diseases. The National Organization for Rare Disorders (NORD) introduced Rare Disease Day in 2009, partnering with the European Organization for Rare Diseases (EURORDIS). This year’s theme is “Day-by-day, hand-in-hand” to help focus on the daily lives of patients, families and caregivers who are living with a rare disease. Click here to find events happening in Utah.
In the United States a rare disease is defined as affecting less than 200,000 people. Although individual diseases may be “rare”, being diagnosed with one is not. Nearly 30 million Americans are living with a rare disease, and two-thirds of those are children. Many types of cancer, PKU, Rett syndrome, Huntington’s disease, and are all on the list of the 7,000 known rare diseases. Rare diseases are often difficult to diagnose and treatments or cures are often scarce. Click here for 7 ways to participate in Rare Disease Day.
