Friday, October 16, 2015

MinM*: Patient Tookits and Resources

Resources for undiagnosed patients -- a starting point:

Becoming an Empowered Patient: A Toolkit For The Undiagnosed
PDF Toolkit

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.

Preparing for Appointments

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