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Washington Post: Website tackles an all-too-common problem with rare diseases: A shortage of information
When my neurologist told me I had something so rare that most doctors would never see a patient with LEMS in their lifetime, I had no idea where to start to look for info. This Washington Post article talks about the benefits of having organizations such as NORD to turn to. When I was diagnosed, I had no idea what NORD was. How about you?
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