Here at Patient Worthy, we know how hard it can be trying to find information online about rare diseases.
Blogs about personal experiences can highlight the worst aspects of a disease or condition; news stories can hold out false hope by breathlessly announcing an exciting breakthrough; and statistics can be outdated at best and flat-out wrong at worst.
In other words, we’re big believers in the quality of online searches, versus quantity of sites searched.
For me, the NIH is always a good go-to for starting a search. As a government body dedicated to health research and education, they have no particular product to sell or axe to grind, and everything they offer is in the public domain.
Case in point: The information they offer on myasthenia gravis.
Tucked away in the NIH’s National Institute of Neurological Disorders and Stroke section, the MG Information Page offers a brief overview of the disease and available treatments, and offers links to MG clinical trials being conducted by the NIH and researchers around the world.
Also included? Links to major support and advocacy organizations like the Myasthenia Gravis Foundation of America.
Granted, this is only a surface-level introduction, but the same page also links to a fact sheet that offers a deeper dive into MG and, for the hardier reader, scientific papers and research literature from the NIH’s vast archives.
So if you’ve been diagnosed with MG, this is a great jumping-off point on your way to becoming an informed and empowered patient.
Happy reading!
Head over to the NIH to start your MG research. Are there other resources and sites that have helped you? Share them in the comments below!
