As originally reported in Mayo Clinic, Dr. Veronique Belzil realized she wanted to leave her job as a psychologist to find a cure for amyotrophic lateral sclerosis when she saw…
The Patient Seminar Series is an event in which those who are affected by rare diseases in some way share their experiences. Patients, family members, medical professionals, and legislators all…
According to a story from docwirenews.com, health-related quality of life (HRQOL) is going to be significantly impacted in patients with chronic kidney disease (CKD), especially as the disease progresses. Biomarkers…
According to a study published in the scientific journal Neurology, the survival rates of patients with Lambert-Eaton myasthenic syndrome (LEMS) were compared to that of the general population as well as…
Happy Valentine's Day! We hope everyone's enjoying some treats and appreciating the people they love today-- whether that's a romantic partner, a friend, or a family member. We're starting out…
According to a story from mmm-online.com, a recent infographic highlights the challenges that rare disease patients worldwide still face when it comes to getting the treatment that they so desperately…
NeuroSense Therapeutics, a biotechnology company, is in the process of developing PrimeC. PrimeC was created for the treatment of amyotrophic lateral sclerosis (ALS), and it is meant to slow or…
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On February 3, 2020, twenty-seven newly installed flags of the European Union stood in the gleaming lobby of the new European Medicines Agency (EMA) headquarters in Amsterdam. The Charcot-Marie-Tooth…
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