The United States defines a rare disease as a disease that affects fewer than 200,000 people in the U.S. Other regions define a rare disease as a disease that affects fewer than 1 in 2,000 people in Europe and Canada.
The Orphan Drug Act was a law passed in 1983 to incentivize pharmaceutical companies to develop drugs for rare diseases, or “orphan diseases”. Under the ODA, a rare disease is defined as a disease that affects fewer than 200,000 people in the United States.
Did you know that 25 to 30 million Americans live with a rare disease? This number comprises over 7,000 rare diseases, making rare disease research and advocacy that much more critical.
A chronic illness is a long-lasting health condition that requires ongoing medical attention and often cannot be cured. These conditions typically last for at least one year and can limit daily activities, require ongoing treatment, medication, and/or other interventions.
60% of U.S. adults (129 to 130 million people) have at least one chronic condition, with 40% to 51% having multiple chronic conditions. Over 30 to 40% of U.S. children have at least one chronic condition (more than 25 million children). These numbers are continuing to grow for both groups, making research, awareness, and advocacy all the more crucial.
Created by Christine Miserandino, a blogger living with Lupus, Spoon Theory is a metaphor that uses spoons to represent the finite energy a person has in a day, especially those with chronic illnesses or invisible disabilities, where each task costs a "spoon" (energy unit) and running out means no more energy for the day, helping explain limited capacity and the need to pace activities like showering, eating, or working, to avoid burnout.
"Spoonies" (singular term: "Spoonie") are people living with a chronic illness, disability, or energy-limiting condition, who use the Spoon Theory to explain their limited daily energy, represented by "spoons" that get used up by activities, requiring careful pacing to avoid total depletion. The term unites a community that shares experiences of invisible struggles, validating why tasks take effort and why plans might change unexpectedly.
