Do you ever have any burning questions about a rare disease that you’re just dying to know the answer? Us, too. Lots of ‘em.
That’s why we’re presenting our list of 10 hard-hitting rare disease questions!
1. Why are treatments so expensive? Like, so expensive.
2. Are there other people out there like me?
3. How do I figure out if my doctor actually knows about my rare disease or has treated people with my disease before?
4. How do I justify the side effects of treatment (barf, fatigue, aches…) every day?
5. Why aren’t African Americans always included in trial studies?
6. Why isn’t more research being done on my disease? And how the heck am I supposed to find it?!
7. How do I trust my doctor isn’t just selling me drugs for the money?
8. Why can’t I take certain drugs?
9. Why does every drug seem like it has to have some horrible side effect?
10. Why does it take so d**n long to get drugs on the market? But, really.
Like our list? Now, we want to hear what YOU have to say. What questions hit the mark? What questions did we forget?
