Resources for undiagnosed patients -- a starting point:
Becoming an Empowered Patient: A Toolkit For The Undiagnosed
For many people with a rare disease, obtaining a correct diagnosis takes time. The Shire Rare Disease Impact Report found:
- The average patient spends five to seven years searching for a proper diagnosis.
- They typically consult with up to eight physicians, receiving two to three misdiagnoses.
- Physicians (both primary care and specialists) often don’t have the time, resources, or information to properly diagnose/manage patients with rare diseases, compared to more common diseases.