Duchenne muscular dystrophy is a very serious and fatal disease that slowly destroys every muscle in the body. This rare disease affects one out of every 3,500 people and mostly…
Sometimes, the path to diagnosis takes many twists and turns. This is true for people who have Primary Biliary Cholangitis (PBC), according to Gail from the PBC Society of Canada. In this video, she…
1. On Thursday, June 1st at 12 pm EST, 11 am central, there will be a seminar by the Amyloidosis Foundation to better understand this complex disease. It will be narrated by two physicians from…
According to an article from Rare Disease Report, a brand new app has been created for sarcoidosis patients. Created by Misha Rosenbach, the app was developed in partnership with the Foundation for Sarcoidosis Research.…
12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…
Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…
A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…
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