In the realm of rare diseases, misdiagnosis abounds. A 2023 study found that rare disease patients are misdiagnosed an average of three times and see five doctors before being accurately diagnosed. These misdiagnoses extend suffering, complicate treatment, and leave individuals and families grappling with uncertainty and frustration. How Misdiagnosis [...]

A Costly, Expensive and Frustrating Quest for a Diagnosis An experience many of our patients share is one of repeat visits to hospitals, care providers, and specialty practices for tests and examinations. For people with rare diseases, an accurate diagnosis takes 5 to 8 years on average. Others wait [...]