What does "orphan disease" mean for someone with it?

Rare condition: "orphan" diseases are rare medical conditions - they are called orphans because so few people have these diseases that it doesn't make financial sense for drug companies to pay for research to find cures, so in the past they didn't get much help. Now these orphans are "adopted" by nih, gov't & special foundations, so there are special funds to help find treatments and cures.

Low frequency: This is a political term for conditions that are too uncommon for pharmaceutical companies to invest in treatment because they could not expect to make a profit. A bill has been passed some years ago giving significant breaks for these diseases and in a few cases, the companies are making huge profits for "orphan" drugs. For someone with one of these diseases, it just means a rare condition.