Elizabeth Jane Allen, known best as "Betty", will be honored this week for the wonderful woman she was and the lasting impact she has made on the cystic fibrosis community, reports…
Welcome back, Patient Worthians! This week, we have an opportunity for Parkinson's patients, and an update on an Amyloidosis app. We also have two stories of teenagers whose lives suddenly…
Adam Murphy, a reporter for CBS46 learned of his mother's diagnosis of Progressive Supranuclear Palsy, PSP, in 2010 and decided to use his reporter platform to help her, originally reported…
The Myra and Robert Kraft Family Foundation was established in 2016 creating an initiative to to bring together an alliance between the Harvard Business School with the Broad Institute of…
Carl Luepker was diagnosed with dystonia when he was 12-years-old, reported KALW. The twitching started when he was 10-years-old. This quickly started affecting his piano playing, something he loved so…
Welcome back, Patient Worthians! We're starting out the new year with stories of strength and awareness. This week, we have an article about a man with CSF leak, whose life…
A study recently published in the journal, Brain, has suggested that deficiencies in lysosomal storage genes may promote the development of Parkinson’s disease. Parkinson’s disease is a central nervous system…
If you have a rare disease, chances are, sometimes you feel all alone in your experience. When you look around, there are people all over the world fighting similar battles.…
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