Happy Monday! This week, we have stories on a potential treatment approach for an aggressive form of mitochondrial disease, an experimental treatment for osteosarcoma earning Rare Pediatric Disease designation, and…
Patient Worthy is proud to announce that we have recently partnered with Life on the Level, a support group and advocacy organization based in Leicestershire, United Kingdom. Life on the…
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…
From October 3-21, 2022, HAE Junior, a Patient Worthy partner organization, will have its art exhibit on display in the halls of the Czech Parliament. HAE Junior is an advocacy…
Jack Johnson was diagnosed with Fabry disease when he was just seven years old. He likes to compare living with the rare disease to long COVID, but unlike long COVID,…
According to a story from the Glasgow Times, David Steed of Paisley, UK, was diagnosed with adrenoleukodystrophy when he was 18 years old. At the time, he didn't have any…
October 5 is recognized each year as Progressive Familial Intrahepatic Cholestasis (PFIC) Awareness Day, a time to help spread awareness about this rare disease among the medical field and the…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to a story from Yahoo! News, a mother that is well attuned to her children can often have a special intuition when something is wrong. Thirteen year old Sheldon…
Happy Friday! A tropical storm system will be traveling up through the mid-Atlantic this weekend, bringing wind and rain. Hunker down! This week, we have stories on Duke University being…
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…
According to a press release, the gene therapy company bluebird bio, inc. has recently announced that its gene therapy elivaldogene autotemcel (marketed as SKYSONA) has received Accelerated Approval status from…
Seven-year-old Rydder Ames of Hamilton, Ohio began having symptoms five months ago. His mother, Krista Steven took him to the ER after a week-long headache followed by a loss of…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to a story from neurology.duke.edu, Duke University has recently been recognized as a Center of Excellence for Dystonia treatment by the Tyler's Hope for a Dystonia Cure Foundation. This…
Happy Friday! The days are getting shorter and the first cooling winds of autumn have started to blow. This week, we have stories on Charcot-Marie-Tooth Disease Awareness Month, a special…
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…
On September 8, 2022, HCU Network America, a Patient Worthy partner organization, hosted a webinar program titled "Classical Homocystinuria: A Journey to Improve Outcomes Through Newborn Screening Methodology." The webinar…
September 24, 2022 will be recognized as Familial Hypercholesterolemia (FH) Awareness Day, a time to spread awareness about this under-recognized condition among the general public and in the medical field.…
Joe and Cynthia are the founders of Jordan's Guardian Angels, a Patient Worthy partner organization that is committed to supporting research into Jordan's syndrome, an incredibly rare disorder named after…
According to a story published in Healio, a recent study has concluded that a combination of standard treatment and belimumab produces better outcomes for patients of East Asian descent living with…
According to a story from UN News, the World Health Organization (WHO), in conjunction with partners, has initiated a new vaccination campaign targeting meningitis in Africa. This is part of…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to a story from Buzzfeed News, actor and activist Jane Fonda, age 84, recently announced that she was diagnosed with a form of non-Hodgkin lymphoma. She has begun treating…
Happy Monday! This week, we have details on a method for detecting Alzheimer's 17 years in advance, the story of a teen living with Usher syndrome, and a possible breakthrough…
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