We here at Patient Worthy shine a spotlight on rare diseases, but these disorders often get overlooked by much of the media. So anytime a rare disease is discussed out…
In a Washington Post article by Ben Guarino, new cancer treatments lasso the power of naturally occurring immune cells in the body. Researchers are looking into ways modify them to…
Kruz and his sister Paizlee are the only known siblings diagnosed with the ultra-rare condition Schimke Immuno-Osseous Dysplasia. Their parents, Jessica and Kyle, are doing everything they can to raise…
Pets brighten the lives of many people across the world. There are a variety of studies and pieces of evidence that point to pets improving the quality of life for…
Patients living with PKU (phenylketonuria) have hope as researchers look into new drugs that may help the body break down phenylalanine. PKU is an genetic disease in which the body lacks…
I am a patient who has ITP and attended the PDSA conference this year in Cleveland, Ohio. I learned so many new things from other attendees and from the outstanding…
Aidan Maddocks, 14, from Pietermaritzburg, was diagnosed with Biliary Atresia at birth, a childhood liver disease that only affects 1 in 10,000–15,000 live births. He was given a life expectancy…
Researchers from the Newcastle University are investigating the personal and financial impacts of persistent facial pain on patients in the UK, and what can be done to improve medical…
According to a story from ABC News, Alexia Baier was four years old when she came down with strep throat, an infection caused by group A streptococcus bacteria. It is a…
According to a story from the Los Angeles Daily News, for children with debilitating rare illnesses like cerebral palsy, epilepsy, or muscular dystrophy, it can often take a long time…
The National Center for Complementary and Integrative Health (NCCIH) has launched an app that is designed to inform people about the science behind herbs and herbal supplements commonly marketed for…
According to a story from pm360online.com, the company PledPharma recently announced that its drug candidate Aladote has completed its first safety evaluation with a positive result. Aladote is in development…
According to a story from healthline.com, many cancer survivors that have been treated with chemotherapy wind up facing significant challenges after their treatment. One such example is a phenomenon known…
Novartis has teamed up with Numinous Games to develop Galaxies of Hope, an app that is designed to support the neuroendocrine tumour (NET) community. You can read the original source…
Jaiden, a twelve-year-old boy, has been diagnosed with stiff skin syndrome, a rare disease that causes his skin to harden. His family has been sharing their experiences with the condition.…
I'll start this article, like many others, by mentioning that although I'm convinced I know everything about everything because I minored in biology in college, I'm really not a doctor.…
According to a story from the Washington Post, a new technique for delivering genes into immune system T cells could make immunotherapy a much more accessible option for treating rare…
According to a story from Chronicle Live, children struggling with the rare childhood cancer neuroblastoma and their families celebrated the news that the National Institute for Health and Care Excellence…
Happy Friday, everyone! We hope the weekend is bringing everyone some time to relax. Today, we're wrapping up the week with four stories we wanted to highlight this week. We…
July 30th is Gastroschisis Awareness Day! Gastroschisis is a rare birth defect of the abdominal wall. With this condition, the baby’s intestines stick outside of the body through a hole in…
The organisations Guerbet and IBM Watson Health are collaborating to develop an artificial intelligence tool designed to support the diagnosis and care of liver cancer. The source article can be…
According to a video and article published by Duchenne UK, Professor Steve Winder has been granted additional funds to study the effectiveness of soy as a treatment for Duchenne muscular…
According to a story from PR Newswire, the biopharmaceutical company AbbVie has recently announced that it has sent a supplemental New Drug Application to the FDA for its product venetoclax,…
People Magazine published an article about 20-year-old Kara Dunn who suddenly became paralyzed during a vacation to Spain, due to a rare disease she didn't know she had. Guillain-Barré Syndrome…
According to a story from the U.S. Food and Drug Administration (FDA), Commissioner Scott Gottlieb has released a press release which discusses in detail the agency's efforts in the development…
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