On May 12th, 2017 the University of Rochester Medical Center hosted the first Technology and Rare Neurological Diseases Symposium (TRNDS). It successfully brought together patients, researchers, leaders in health technologies,…
One of the first things many people do after being diagnosed with a rare disease is search online to find out more about it. I know that is exactly what…
It is hard to study rare diseases because there are so few people with them. Patients are scattered all over the world. Many are children. Many cannot travel. How to make…
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