The documentary The Bleeding Edge has just been made available on Netflix in the US and UK (27th July 2018). Described by Netflix as “controversial”, the documentary explores the impact…
I met Jon at the 2018 United Leukodystrophy Foundation Conference and had the privilege of learning his and his family's story. Jon was born in Wisconsin in 1992, joining the…
A study of Lynparza (olaparib) in combination with abiraterone for the treatment of metastatic castration-resistant prostate cancer has shown promising results. The full article can be read here, at Bio…
Results from two studies looking at the effects of an experimental drug (bardoxolone) on kidney function in patients with chronic kidney disease (CKD) have been released. One of the studies…
Ailani Banuelos is a 12-year-old with a dream. She not only wants to see the ocean but paddle in it. Living in Chicago made the dream fairly difficult. There simply…
Ashley Wibberly’s son Levi was born in September of 2013 and lived for just 20 months with Krabbe disease. Ashley couldn’t have seen it coming. Now, however, a new test…
What do Dave Winfield, Steve Garvey, and Don Baylor Jr. all have in common? Besides all being big names in major league baseball, each of the famous athletes is contributing…
Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate. In her early twenties, Andrea became the legal guardian…
According to a story from The Japan Times, a team of Japanese researchers from Riken and the National Cancer Center were able to use artificial intelligence to diagnose stomach cancer…
According to a story from the Sydney Morning Herald, Maxwell Hayes thought that is cancer was gone after an eight year period of remission. Then, his mantle cell lymphoma returned.…
Happy End-of-July! As the week comes to a close, we want to spotlight four articles. We have an honest piece from PW contributor, Tom Seaman. Next, we investigate the root…
According to a story from Business Wire, the non-profit foundation CurePSP has agreed to allocate funding for four venture grants. The funding is worth over $300,000 and will be directed…
According to a story from the Royal College of Physicians, the organization has chosen to release new guidelines regarding the treatment of patients with complex regional pain syndrome, a potentially…
Don't feel bad if you've haven't heard of hemochromatosis - that's why we are here! Hemochromatosis (also known as iron overload disorder) is a disease that is often under-diagnosed. It…
According to Scientific American, medication has long been the primary mode of treatment for those with Tourette syndrome. While these medications are effective in controlling the disease, the drawbacks…
According to a story from the Vancouver Sun, an extremely poisonous mushroom appears to contain some compounds that could be potentially effective in fighting cancer cells. A 2012 study demonstrated…
Denise Albert is a busy woman. She founded The MOMs media company. She enjoys music, concerts, and time with her boyfriend. She is also a happily divorced mom of two…
An ongoing Phase 3 clinical trial program is investigating the drug PXT3003 as an experimental treatment for Charcot-Marie-Tooth disease type 1A in adults. Pharnext SA says that they expect to…
The first patient has been enrolled onto a Phase 3 clinical trial investigating topical dermal reproxalap as a possible treatment for Sjögren-Larsson syndrome associated ichthyosis. The original article can be read…
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…
Researchers have investigated whether self-management electronic health (eHealth) interventions, such as text messaging, apps, and online cognitive-behavioural therapy, should be used to help patients with sickle cell disease self-manage the…
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…
We recently read an article in Health News and Information that connected two conditions we weren't expecting to read about together. Scientists have discovered a potential link between rheumatoid arthritis.…
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…
According to a story from globenewswire.com, the biopharmaceutical company Chiasma, Inc., recently announced that it has completed the enrollment of 135 patients for its Phase 3 clinical trial. This trial…
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