New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a ... Read more
Updates
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Riding the Waves of LGS
As a mother to a child with Lennox-Gastaut syndrome (LGS), I’ve learned that our son’s quality of life changes with the tides. When our ... Read more -
Epidiolex Helps Control Seizures in Children Without Affecting Cognition, Study Reports
Epidiolex, a cannabidiol add-on medication for treatment-resistant epilepsy, was safely given to children and teenagers for one year in a clinical trial that included ... Read more -
No Evidence of Drug-Drug Interaction Between Clobazam, Epidiolex, Study Finds
Epidiolex (cannabidiol) and clobazam showed no signs of adverse drug-drug interactions in treating people with epilepsy, according to the results of a recent Phase ... Read more -
The ‘Kid in the Helmet’ Hasn’t Changed, Others Have
My son Brian’s class photos are always great. He doesn’t normally respond to any verbal instructions, so getting him to sit still, look at ... Read more
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Cannabidiol Epidiolex Can Increase Diacomit Levels in Epilepsy Patients, Study Finds
Using the cannabidiol Epidiolex in combination with Diacomit (stiripentol) or Depacon (sodium valproate) — ... -
An LGS Diagnosis and a Caregiver Mom’s First Ride into the Unknown
It’s July, and for a teacher like me, it’s the peak of summer training. ... -
CBD Linked to More Side Effects in Epilepsy Patients Due to Interference With Other Medications
Oral treatment with cannabidiol (CBD) is associated with a greater likelihood of adverse events ... -
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare ... -
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Report of Tongue Lesions Highlights Importance of Dental Check-ups in LGS
Two individuals with Lennox-Gastaut syndrome (LGS) who had masses on their tongues, presumably as ...
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