Rare and Undiagnosed Medical Conditions

Rare and undiagnosed diseases can involve complex symptoms, prolonged diagnostic journeys, repeated medical evaluations, and significant uncertainty for individuals and families. This path is often described as a diagnostic odyssey and may involve years of specialist visits, testing, inconclusive results, misdiagnoses, and searching for answers. Although each rare disease affects a relatively small number of people, rare diseases are collectively common: approximately 1 in 10 Americans lives with a rare disease.

Children, teens, and young adults with rare or undiagnosed medical conditions may face challenges related to school, daily functioning, relationships, medical trauma, and the emotional impact of uncertainty. The resources below offer education, advocacy, connection, and support for individuals and families navigating rare disease, undiagnosed illness, complex medical conditions, and diagnostic uncertainty.