A disease is considered rare when it affects fewer than 1 in 200,000 people, which means they're often under-researched, under-funded, and lack treatments. SPATA5 and SPATA5L1-related disorders are ultra-rare, with only about 150 individuals diagnosed worldwide. Families face long diagnostic journeys, limited treatment options, and little research that reflects their child's unique biology. The families who are affected are truly one in a million - let's help!