How can people help a family member with a rare disease get the best possible treatment?
With rare diseases, it’s even more important for the family to be involved than it is with more common diseases. This is because there may be only a few doctors, and only a few medical centers, with expertise on this particular disease. Your physician may be able to help you find an expert on your disease. You won’t be insulting him or her by asking. Doctors understand the importance of involving someone who has experience with the disease. It’s usually best, with rare diseases, to be treated at a teaching hospital affiliated with a university, rather than a smaller community hospital. The teaching hospitals would be more likely to have experience with rare diseases. We have a list of teaching hospitals in each state, and you can call us to ask for the ones near you. Another very important thing to do is to find out if there is a patient organization for your disease. Search the Organizational Database on this website to find an organization specifically for people with your disease. T
