A lack of patient engagement is an issue across many rare diseases, with atypical hemolytic uremic syndrome (aHUS) acting as the perfect example. In fact, aHUS patient organizations are still…
Explaining something as complicated as a rare disease to a child can be difficult. That's why Alexion Pharmaceuticals created a books series titled "Inspired By." The series is a way…
Written by Carly In 2018, I was a new college graduate with a passion for serving others and a desire to see the world. I combined these desires and joined…
For many patients, certain treatments can be expensive, invasive, or difficult to access. But it doesn't have to be this way. According to aHUS News, researchers are running two separate…
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…
The aHUS Alliance has taken on a new project to raise awareness for atypical hemolytic uremic syndrome (aHUS) and the needs of the patient community, according to aHUS News. The…
According to a story from Market Watch, the biopharmaceutical company Alexion Pharmaceuticals, Inc. has recently announced that the US Food and Drug Administration (FDA) has approved a new formulation of…
aHUS Tracking Atypical hemolytic uremic syndrome (aHUS) is a rare disease that causes blood clots to form within the small blood vessels in the kidneys. These clots lead to organ damage…
Researchers have announced their identification of a specific gene mutation that can lead to atypical hemolytic uremic syndrome (aHUS). This gene is called DGKE and it is not a part of…
According to a recent press release, Japan just approved ULTOMIRIS (ravulizumab) for patients with atypical hemolytic uremic syndrome (aHUS). Developed by biopharmaceutical company Alexion Pharmaceuticals ("Alexion"), ULTOMIRIS represents a…
Happy Friday! July is almost over, which means that Juvenile Idiopathic Arthritis Awareness Month is drawing to a close. But it's not too late to bring attention to this often…
According to a story from ahusnews.com, traveling with atypical hemolytic uremic syndrome (aHUS) takes some extra preparation and planning ahead. This syndrome can affect multiple organ systems and especially the…
In a study published in BMC Pediatrics, researchers have found atypical hemolytic uremic syndrome (aHUS) and autoimmune thyroid disease may not only be a relatively common pair of rare diseases…
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…
According to a story from Barron's, the biotechnology company Alexion Pharmaceuticals has recently announced plans to test its drug Ultomiris as a potential treatment for COVID-19. As the scientific community…
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 a story from statnews.com, the biotechnology company Alexion Pharmaceuticals recently announced that its product Ultomiris, which was recently approved as a treatment for paroxysmal nocturnal hemoglobinuria, was also…
According to a story from The Chicago Tribune, Darnesha Bankston, age 23, was rushed to the hospital just before Christmas last year with a bunch of severe, life threatening symptoms.…
According to a story from the Tennessean, learning that both her husband and daughter had the rare and dangerous disease atypical hemolytic uremic syndrome (aHUS) was devastating for singer-songwriter Cameron…
Last week was World Kidney Day! And in fact, the whole month of March is kidney month - so there's no excuse to brush up on some key kidney facts…
Shantee Anaquod has gone from planning the end of her life to planning the rest of her life. After being bed-ridden for over a month with the fatal disease, atypical…
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…
© Copyright Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
