An 18-year-old woman in Korea underwent a kidney transplant after developing end-stage kidney disease, for which she had been treated with dialysis. Doctors were unsure of the cause. While the…
We are excited to announce that Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
When the 19-year-old French woman first visited the hospital, she was extremely lethargic. She displayed neurological symptoms. Upon kidney failure, the patient was admitted into the ICU. But soon, doctors…
Ultomiris, a product of Alexion Pharmaceuticals, has recently been studied in a Phase 3 clinical trial. This study was intended to ultomiris' effect on life-threatening complications of atypical hemolytic uremic…
Atypical hemolytic uremic syndrome (aHUS) is a rare condition which can be sparked by pregnancy, although it can also occur without it. Essentially, if you are genetically predisposed to the condition,…
Many patients with rare diseases require some sort of treatment or therapy to manage their conditions. In the case of atypical hemolytic-uremic syndrome, or aHUS, this therapy is dialysis. Learn…
Alexion Pharmaceuticals, Inc., a company that is advancing a rare disease pipeline in complement biology, recently issued a series of press releases announcing positive results of a Phase 3 study…
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…
ChemoCentrx has been working to develop a drug to combat auto-antibody-associated vasculitis (AAV), C3 glomerulopathy (C3G), and atypical hemolytic uremic syndrome (aHUS). Its name- Avacopan. ChemoCentryx has always had a…
It’s so easy to nitpick and find things wrong with organizations. It’s much harder to see what it is they're doing that's good. One particularly fun punching bag is the United…
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