Dear Primary Care Clinics, Rare Disease Warriors Are Not Pariahs; We Are Your Patients. -From a SPS Fighter As a rare neuromuscular disease patient, who fought 21 years for a…
According to CBC, Marie-Eve Chainey was on dialysis six out of seven days a week. For 15 years, this was her life. It was a necessary feat to control her…
Case Western Reserve University researchers have recently developed gene-carrying nanoparticles that are able to bring healthy genes to those negatively affected by Leber congenital amaurosis (LCA), a disease that causes…
It's not unusual for a disease like psoriatic arthritis to come with the risk of having other conditions, or a comorbidity. More than you might think, people with psoriatic arthritis also…
Early this month, Novocure announced that the first patient was enrolled in the RTOG Foundation's Phase 2 pilot trial for recurrent glioblastoma. This trial is aimed to test the safety and…
According to an awesome story in DelRay Newspaper, Kelsey Diamantis had always dreamed of going to the Kentucky Derby at Churchill Downs to watch the horse race. While thinking about…
Have you ever just felt so desperate for something that you jump into a decision, without thinking it through completely or weighing the possible repercussions of your decision? It had…
Spinal muscular atrophy (SMA) occurs when the immune system attacks motor neurons, resulting in the muscles surrounding the spinal cord atrophying (degenerating). SMA is an inherited disorder that disables the…
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