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…
To read part one of this story on cystinosis, click here. Briana and Ashley are two adult women from opposite regions in the United States. Briana lives close to her…
According to a story from Reuters, the Danish biotech company Genmab saw its share value drop by a quarter after Johnson & Johnson, which had partnered with the company to…
She wears a lacy white dress with a long, white veil. Her beautifully shaped eyebrows arc over long-lashed eyes. Her smile, illuminated by bright red lipstick, speaks of the happiness…
A new study conducted by Centers for Disease Control and Prevention found that premature babies were more susceptible to having obstructive sleep apnea (OSA), reported RadioAllen. About 1 in 10 newborns…
Researchers have carried out a study into the genetic mechanisms involved in hereditary angioedema acute attacks. They found that two genes, called uPAR and ADM, had a particularly strong influence.…
Happy June everybody! We hope everyone's ready to kick off their summer, whatever that may include. This week we have two stories from younger patients who are leveraging their own…
According to a story from apnews.com, President Trump signed the "Right to Try" bill passed by Congress into law on Wednesday, May 30th, 2018. During the signing ceremony, he was…
Research into possible facial creams containing the medicine rapamycin have found that they are effective for reducing facial tumours in people with tuberous sclerosis complex. The full article can be…
According to an article from Globe Newswire, the company Shire plc recently presented new data in relation to recombinant human parathyroid hormone (rhPTH) and its relationship to hypoparathyroidism. This information…
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