04/02/2018
What are some of the problems people with rare diseases experience?
• 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 centers with experience for a particular disease
• Paying for treatments that are generally more expensive than those for common diseases
• Difficulty accessing medical, social, or nancial 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
