1967 In 1967 my ortho said "this has to stop." I would just get out of traction; then a cast; heal; then be able to walk for 2 months and…
Timothy and Andrew Revell are two brothers born with Duchenne muscular dystrophy (DMD), a rare neuromuscular disorder that sees the progressive wasting and weakness of the muscles. This condition has…
According to a press release from April 8, 2021, a partnership between Project ALS and the ALS Association has allowed for the development of a Phase 3 clinical trial. Two…
According to a story from Scary Mommy, mother Sara McGlockin recently received devastating news: the drug that was successfully treating her five year old daughter Marian was being discontinued in…
It can take years for patients with rare diseases to get diagnoses and understand more about their conditions. But what if someone developed a new and efficient technology that could…
A healthy brain translates into a healthy blood-brain barrier (BBB) which is a complex series of blood vessels in the brain. When the BBB malfunctions, it may lead to diabetes,…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Every year, an estimated 3-7 children in Norway are born with phenylketonuria (PKU), a rare genetic disorder characterized by an inability to break down phenylalanine. Researchers in Norway wanted to…
A note from Lisa: Please read and share this piece with anyone living with ALS or any life-threatening condition that can benefit from compassionate use: Lisa’s friend of thirty years…
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