At the heart of rare disease treatments is research. Currently, 95% of all rare diseases still have no approved therapies. Although there has been an increased focus on rare diseases…
According to a story from globenewswire.com, the biopharmaceutical company Marinus Pharmaceuticals, Inc., recently announced the presentation of Phase 2 clinical trial of the drug ganaxolone as a treatment for CDKL5…
According to the Des Moines Register, Iowa has a new medical marijuana program rolling out on December 1st, but many doctors in the state have reservations about enrolling patients. Iowa's…
The organisations Takeda Pharmaceutical Company and Ovid Therapeutics are collaborating over the development of the experimental drug TAK-935/OV935 as a possible treatment for several rare epilepsy syndromes. Takeda has just…
According to a story from uk.news.yahoo.com, when Billy Caldwell, age 12, and his mother returned from traveling to Canada, the Home Office initially confiscated a substance that had been the…
The biotechnology company Bloom Science has found that the ketogenic diet can be an effective treatment for epilepsy due to its effects on gut bacteria. Bloom Science is planning on…
According to a story from edinburghnews.com, mother Karen Gray is about to seek access to cannabidiol oil for her five-year-old son, Murray, who has a rare type of epilepsy, Myoclonic Astatic…
According to a story from statnews.com, a drug derived from substances originating in the cannabis plant may be nearing approval by the U.S. Food and Drug Administration. The drug is…
Scientists are investigating whether delaying the onset of epilepsy in very young children could reduce or prevent other neurological conditions such as learning difficulties and autism, reports Medical Xpress. This…
Zero. Nada. Zip. Usually having nothing isn't a good thing, but in the case of people with uncontrolled seizures--like those that occur with Dravet syndrome--zero (as in no seizures) is…
On behalf of the CNF: Applications for the 2017 Harnett Mini-Grant: Now Being Accepted In January 2014, the Harnett Mini-Grant was founded by Mr. Michael Harnett, as an enduring memorial…
As a child of the 70s and 80s, I’ve lived long enough to see my geeky obsessions burst out of the shadows into mainstream pop culture and profitability. Take comic…
Tuberous sclerosis complex (TSC) is a rare genetic disease. It causes tissue to form abnormally in patients at a young age. Different organs are affected by it, meaning that symptoms…
Any parent watching their child have an epileptic seizure can tell you that even the shortest seizure seems to last forever. In the case of a seizure that goes on for…
Marijuana use is certainly controversial and a debated topic. But what's less debatable is the progress of the movement to legalize and embrace it American society - especially for medicinal use.…
My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease. My heart breaks as well for their parents, siblings, and grandparents…
By 2013, 17 states plus the territory of Washington, DC legalized or formed legislation around medical marijuana. A study by the University of Georgia suggests that this change caused about a…
Lace up those walking shoes—even if you’re “walking” is really “wheeling” in your wheelchair and go call all your aunties, uncles, friends, and complete strangers for their pledge of support:…
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