Steven Rodriguez was nineteen years old attending college in California when he began to have severe headaches. A recent article from the UCSF Science Center gives an account of Steven’s…
The outcome of myelodysplastic syndrome (MDS) varies. The disease can lie dormant for decades, or it can become fatal in a matter of months. According to a recent article in…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
September is Charcot-Marie-Tooth disease (CMT) Awareness Month! The Charcot-Marie-Tooth Disease Association has put together 5 different ways you can help spread awareness of this rare disease this month. The Association…
Written by Gina Baker This year Global Mitochondrial Disease Awareness week is September 19-25, but my family and I will continue to fight this battle for the rest of…
There are now plans in place to study a gene therapy for GNE myopathy (GNEM), with human dosing expected to begin in 24 months. The plans were developed by the…
According to a recent article at MSN.com, chronic fatigue syndrome is finally receiving the attention it needs after long COVID sufferers experience similar symptoms. Myalgic Encephalomyelitis (ME) Myalgic encephalomyelitis…
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