Shane James has recently completed a 24-day long run to fundraise for the Stiff Person Syndrome Research Foundation, earning about $20,000 by the end of his trek. The run, called…
The UK has recently began the practice of the new UK Rare Disease Framework, a government effort that aims to spread awareness, quicken the diagnostic process, and improve treatment and…
Since Bertrand Might was first diagnosed with NGLY1 deficiency in 2012, medical research around this extremely rare genetic condition has expanded. Unfortunately, Bertrand passed away in October 2020. However, his…
Parkinson's Disease Parkinson's disease is a condition which affects the nervous system. The progressive disease influences movement, and can lead to a wide array of symptoms. These may include- Tremors Stiffness…
Recently, research professors from Michigan Medicine - the University of Michigan shared new commentary around cerebral palsy. Specifically, the commentary focuses on current research, policies, and care associated with adults…
As published in the NIH; the NIH is encouraging people with chronic kidney disease (CKD) to consider following a careful diet. They’re not seeking a summer body though. The rare…
February 2nd is recognized annually as Neuroblastoma Awareness Day, which is intended to help spread knowledge and visibility about neuroblastoma, a rare cancer that mostly affects children, among the general…
Rebecca Newsome lives with a rare form of cancer called gastrointestinal stromal tumors (GISTs). In this story, she talks about her experiences as a patient in a question-and-answer format. What…
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