According to a story from Parkinson's News Today, a recent study may have discovered the origins of chronic pain and damage to the sensory nerves as found in some cases…
August is recognized as Spinal Muscular Atrophy Awareness Month. The goal of this event is to help spread information about this rare disorder among the general public and the broader…
According to a story from the CureDuchenne Blog, Dr. Kevin Flanigan of Nationwide Children's Hospital has recently dosed two Duchenne muscular dystrophy patients with an experimental gene therapy. This gene…
According to a story from GlobeNewswire, the biopharmaceutical company GW Pharmaceuticals plc recently announced that its CBD oral solution Epidiolex® has recently been approved as a treatment for seizures associated…
According to a story from mlive.com, the state of Michigan has confirmed its first case of acute flaccid myelitis, a rare disease that tends to affect children, this year. There…
In a recent webinar hosted by the National Organization for Rare Disorders (NORD), a number of speakers discussed an up and coming project spearheaded by the organization: the Rare Disease…
According to a story from PR Newswire, the biotechnology company INOVIO has just announced that the company's investigational product candidate INO-3107 has earned Orphan Drug designation from the US Food…
According to a story from the Columbus Dispatch, Brian McNeal has been living with trigeminal neuralgia for four years. The rare disease leaves him in constant facial pain. The chronic…
According to a story from Psychology Today, one of the most unique genetic disorders known to science it called Williams syndrome. While the disorder causes intellectual disability and other chronic…
According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…
In a recent webinar hosted by the International Waldenström's Macroglobulinemia Foundation (IWMF) and held on July 22nd, 2020, Dr. Jeffery Matous from the Colorado Blood Cancer Institute gave an in-depth…
According to a story from Charcot-Marie-Tooth News, a new nonprofit organization called Shark Tooth Cycling has recently begun operations. The mission of the organization is to encourage young people in…
According to a story from Medscape, the US Food and Drug Administration (FDA) has recently approved a new oral solution as a treatment for symptoms associated with narcolepsy, a rare…
July 30th, 2020 is recognized as Gastroschisis Awareness Day. This event aims to help spread awareness about gastroschisis, a rare birth defect, among both the general public and within the…
According to a story from Globe Newswire, the biopharmaceutical company Ovid Therapeutics and the University of Connecticut School of Medicine (UConn) have announced a new license agreement and research collaboration…
According to a story from The Island Packet, fourteen year old Presley Miller, of Hilton Head Island, SC, was recently confirmed to have died from complications related to the rare…
According to a story from The Philadelphia Inquirer, 25 year old Gabby McNary isn't taking any risks when it comes to the coronavirus/COVID-19 pandemic. Philadelphia was hit hard by the…
According to a story from waff.com, Juliana Goode was first diagnosed with Cushing's disease in September 2018. It was an unusual case as Juliana is a teenager and the illness…
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 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…
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…
According to a story from Parkinson's News Today, a recent study describes the development of a new technology called computational mapping algorithms for neural drug delivery (COMMAND), which was designed…
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