Walking through the hospital when you have a rare disease can be so isolating. There are entire departments dedicated to individual types of cancer, heart disease or diabetes, and yet you can go to specialist who spends their entire lives researching and working on the system of your body that isn't properly working and they can say to you that their hospital simply doesn't treat that illness, yet they have no where for you to go, no one to care about your pain because there isn't a pretty ribbon associated with it. I want rare diseases, unprofitable diseases to come out of the shadows, their patients to be helped. What is your rare disease and how long did it take for you to really get good help?