The National Organization of Rare Disorders’ (NORD) yearly Rare Disease Day will be observed on Feb. 28, 2019. Rare Disease Day is an annual celebration the 25-30 million Americans living with one of the over 7,000 rare or orphan diseases. One in ten Americans suffers from a rare disease, a disease affecting less than 200,000 people.
This year’s campaign, “Show Your Stripes,” calls for the rare disease community to proudly dawn stripes on Rare Disease Day. Patients with rare diseases are sometimes referred to as “zebras.” The term comes from the aphorism coined in the late 1940s by a clinician who instructed his medical interns: “When you hear hoofbeats, think of horses not zebras,” meaning that they should consider the most likely or common condition when diagnosing patients. With rare disease patients, however, clinicians must think of more rare conditions, or zebras.
Rare Disease Day is internationally recognized as Feb. 28. This year, U.S. Pain Foundation had multiple pain warriors who represented the organization during February and also on the first of March for Rare Disease Day. Ambassadors representing U.S. Pain included Suzanne Stewart, Julian Phillips, and Dawn Stancliff.
Each hosted an event to raise awareness for the many Americans living with a rare disease; statistics show 1 in 20 people are affected. Stancliff hosted an information table at the National Institutes of Health in Bethesda, MD; Stewart hosted a table at The Summit in Canton, MI; and Phillips hosted a table at the Harrisburg State Building in PA.
Rare Disease Day takes place on the last day of February every year (Feb. 28 or 29 if a leap year). The objective is to raise awareness and knowledge by calling attention to rare diseases and their impact on patients’ lives. Statistics show 1 in 20 people are affected by a rare disease. Unfortunately, there is no cure for the majority of rare diseases and many go undiagnosed.
To show support, below, U.S. Pain Foundation has provided various ways to become engaged within your community or worldwide. U.S. Pain feels this day of recognition falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.
With one in ten American suffering from a rare disease, rare is more common than most believe. And many rare diseases cause chronic pain. U.S. Pain Foundation is proud to once again partner with the National Organization for Rare Diseases (NORD) for this year’s Rare Disease Day. On Jan. 28, people living with or affected by a rare disease will join patient organizations, policymakers, caregivers, health care professionals, researchers, and industry representatives in solidarity to raise awareness for rare disease. This year’s theme is research; the slogan is “With research, possibilities are limitless.”