• Difficulty in obtaining an accurate diagnosis (this can take years, which can be critical for stopping or halting the progression of a disease)
  • Limited treatment options
  • Little or no research being done on the disease
  • Difficulty finding physicians or treatment centres with experience for a particular disease
  • Paying for treatments that are generally more expensive than those for common diseases
  • Reimbursement issues related to private insurance and medical aid
  • Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease
  • Feelings of isolation and of having been abandoned or “orphaned” by our health care system