According to a story from gopresstimes.com, Lily Laurent, a 13 year old student at De Pere middle school in Wisconsin, has lived with juvenile idiopathic arthritis for nine years. While…
According to a recent article in the Myasthenia Gravis News, a team of doctors in Japan had been treating a man now aged sixty for multiple myeloma (MM). The…
According to a story from ahusnews.com, traveling with atypical hemolytic uremic syndrome (aHUS) takes some extra preparation and planning ahead. This syndrome can affect multiple organ systems and especially the…
According to a story from Myasthenia Gravis News, a recent case report describes a unique case of a 60 year old male multiple myeloma patient. After receiving treatment for the…
According to a story from Markets Insider, the biotechnology company NMD Pharma A/S has recently announced that the Dutch ethics committee has approved the company's plan for a combined phase…
Lupus nephritis causes kidney inflammation and can often lead to chronic kidney disease (CKD). An issue that medical professionals have faced is predicting the likelihood of individual patients developing CKD.…
According to a story from msn.com, two women who were impacted by the rare disease familial chylomicronemia syndrome (FCS) have lead the charge in changing the procedures used by the…
According to a story from BioSpace, the biopharmaceutical company Bioniz Therapeutics, Inc., has recently announced the release of interim results from its phase 1/2 clinical trial. This trial is investigating…
Duncan DeLooze Mr. DeLooze was diagnosed with hemiplegic migraine, which causes similar symptoms to a stroke. The condition also causes seizures. He's gone through surgeries, back issues, shoulder pain, and chronic…
If you're part of the rare disease community, then you probably are not a stranger to explaining your condition to others. But think about it. Has this ever been…
Orphazyme has recently submitted their New Drug Application to the FDA for their Niemann-Pick disease type C (NPC) treatment, arimoclomol. This application comes after the biopharmaceutical company was already granted…
In a recent press release, Knopp Biosciences announced that their drug therapy KB-3061 was granted Rare Pediatric Disease Designation to treat patients with KCNQ2 epileptic encephalopathy (KCNQ2-EE), a rare…
Although we may feel like the world is stopped, thanks to COVID-19, many companies consistently push for technological advances. According to Myeloma Research News, GNS Healthcare is one of those…
For twenty-five years Women of Influence has focused on empowering and helping to advance women in the workforce. Maayan Ziv, a Canadian tech entrepreneur, disability advocate, and voted one…
A duodenoscope is a device used in endoscopic retrograde cholangiopancreatography (ERCP) procedures, in which a doctor uses them to see the top of the small intestine. For a long time,…
Khevin Barnes is a cancer survivor, as he won his battle with breast cancer. While less than one percent of breast cancer diagnoses are males, it is very important to…
Recently, pharmaceutical company RIBOMIC announced that the first patient was dosed in their Phase 1 clinical trial. Ultimately, the trial is meant to determine whether RBM-007 could be an effective…
For a lot of us, self-care is difficult. This is for a lot of reasons, some of which might be guilt, not enough time, putting others before ourselves, not sure…
The 2020 Living Rare, Living Stronger NORD Patient and Family Forum July 18-20, 2020 Cleveland, OH This yearly conference for patients, their families, and researchers features a comprehensive content program…
According to a story from Fabry Disease News, any member of the Fabry disease patient community should strongly consider signing up for the Fabry Registry. Getting involved comes with several…
According to a story from proactiveinvestor.com.au, the drug company Pharmaxis Ltd. announced recently that the US Food and Drug Administration (FDA) has granted it Orphan Drug designation. This designation is…
According to a story from Fabry Disease News, a recent case study analyzed the situation of two cousins living with Fabry disease who were being treated with enzyme replacement therapy,…
According to a story from Star Tribune, Chelsea Coenraads was 14 months old when her mother Monica became convinced that something seriously wrong with her daughter. She had failed to…
According to Ankylosing Spondylitis News, a new treatment, Hulio, has been approved by the FDA. It is a treatment for ankylosing spondylitis and other inflammatory disorders. Although it has been…
According to a story from Korea Biomedical Review, Seoul National University Hospital (SNUH) in South Korea has just announced recently that the process of recruiting patients for the National Bio…
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