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.

• Mayo Clinic
  • Center for Individualized Medicine
  • Complex Care Clinic (ComPACT) for Children and Adolescents
  • Pediatric Inpatient Rehabilitation
• M Health Fairview Pediatrics Rare Diseases
  • Rare Disease Department
• Michael Farrell, MD, Minnesota
  • Primary Care Provider for Complex Patients
• National Organization for Rare Disorders
• Undiagnosed Diseases Network (UDN)
• Digging Deep with the Shadow’s Edge Therapeutic Game and App

* Hope Psychology Practice is not responsible for the content, claims, or representations of the listed resources.