According to a story from med.miami.edu, a team of researchers working at the Sylvester Comprehensive Cancer Center, which is part of the University of Miami School of Medicine, made a…
The below article was originally published on June 14th, 2018 in Miracle Flights Newsletter, The Co-Pilot, and is being republished here with permission. Rebecca is big sister to 10-year-old Amanda…
Click to read parts one and two of Joanie's story. Since 2012, when I left my job as an educator, I have tried many different modes of medical therapies. I'm…
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
A Nigerian mother, Hafsat Aliyu has penned a moving tribute to her beautiful daughter, Zainab, who died of Hodgkin lymphoma, a type of blood cancer, on May 7, 2015. She…
Hemophilia can affect anyone. Let’s make a few things clear: Women are carriers of hemophilia and pass the gene, but men determine the child’s gender. It’s not all on you,…
According to Charcot-Marie-Tooth News, a Chinese family of five who all have the same type of Charcot-Marie-Tooth (CMT) disease share something else in common as well. Not only do they…
Before I start, I want to remind everyone that I am not your doctor or a halfway adequate replacement for your doctor. If you find that you're fainting regularly-- whether…
To read part one of Joanie's story, click here. In 2014, I developed excruciating back pain and eventually the doctors found I had two spinal cord tumors. One was on…
Medical Research Network (MRN) is an organisation that specialises in the conduct of clinical trial visits in the patient’s home and supporting clinical trial sites with nursing resources. MRN aims…
At age 60, I am learning to love and accept the woman I am right now. This is long overdue: I never envisioned a life walking with a white cane…
According to a story from PLOS Medicine, most people will probably tell you that the anti-vaccine movement in the United States is a total failure. While the vast majority of…
The second week of June is Men's Health Awareness week, leading right into father's day! For all our male readers - and for the women who have special men in…
Happy Friday everyone! This was a week with a highlight on research: we cover the state of ME/CFS information at the moment, an exciting treatment approval for people with ulcerative…
1. Start planning your fundraiser early. Logistics take time. 2. Know your audience. There are a million good causes in the world to donate to. You have to know who…
According to a story from Rare Disease Report, Nichol Kirby, who was diagnosed with acute intermittent porphyria in 2015, faced an arduous path to her diagnosis. Her constant pain, which…
According to a story from pm360online.com, the clinical stage corporation Epizyme recently released detailed results from the Phase 2 trial of its leading investigational candidate, tazemetostat. This drug is in…
According to a story from empr.com, a recent study revealed that gene therapy could allow patients with beta thalessemia to stop having to get regular blood transfusions. The gene therapy…
This morning, I was on an elliptical before work, reflecting on the life-long journey I've been on with exercise and Ehlers-Danlos syndrome. I hated PE class as a kid. I…
Patient Worthy is proud to announce some new features to our website! Thanks to your valuable feedback, we have now enabled the personalization of your homepage to emphasize the news…
Researchers from the University Hospital Bonn in Berlin, Germany have successfully used artificial intelligence image scanning to diagnose patients with Glycolipid (GPI) anchor deficiencies, reports Healthcare Analytics News. They recently published…
As summer approaches, let's not take our eye off the ball on awareness efforts! June is Antiphospholipid Antibody Syndrome Awareness Month! Antiphospholipid antibody syndrome is a rare autoimmune disorder characterized by…
According to a story from the Pharma Letter, the Indian government has decided to take some steps to make rare disease and orphan drugs more affordable for its citizens. The…
June is here - and so is Myasthenia Gravis Awareness Month! What is Myasthenia Gravis you say? Myasthenia Gravis (MG) is an autoimmune neuromuscular disorder characterized by weakness and rapid fatigue of any of…
According to a story from cancer.nautil.us, some cancer researchers are beginning to look at the animal kingdom in order to find new answers for finding what it takes to beat…
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