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April 2, 2020April 2, 2020

Epidiolex More Effective than Artisanal Cannabidiol for Controlling Seizures, Early Study Suggests

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Oral treatment with pharmaceutical cannabidiol (CBD), sold under the brand Epidiolex, seems to be more effective to control seizures than artisanal preparations of CBD, in children and young patients ... Read more

April 2, 2020April 2, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

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First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

March 26, 2020March 26, 2020

Spontaneous Mutations Linked to LGS in 2 Boys, Study Reports

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Spontaneous mutations affecting a critical protein produced in nerve and muscle cells, called EEF1A2, were found to be the underlying cause of Lennox-Gastaut syndrome (LGS) in two boys in China, ... Read more

March 26, 2020March 26, 2020

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

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The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. ... Read more

March 19, 2020March 19, 2020

ELEKTRA Trial Testing Soticlestat Completes Early Enrollment of Children With LGS, Dravet

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The ELEKTRA trial testing the investigational oral therapy soticlestat (OV935/TAK-935) in children with Lennox-Gastaut syndrome (LGS) and Dravet syndrome has completed patient enrollment, Ovid Therapeutics has announced. “We completed enrollment significantly ahead ... Read more

March 12, 2020March 12, 2020

Anti-seizure Therapy Banzel Safe, Effective in Children, Adolescents with LGS, Review Finds

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Banzel (rufinamide) — an approved add-on, anti-seizure oral therapy — is safe and effective in lowering seizure rates in children and adolescents with Lennox-Gastaut syndrome (LGS), according to a review ... Read more

March 5, 2020March 5, 2020

LGS Patients with Mitochondrial Dysfunction May Benefit from Keto, Small Study Suggests

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Following a ketogenic (high-fat, low-carb) diet may help reduce seizures and improve cognitive function in Lennox-Gastaut syndrome (LGS) patients with dysfunctional mitochondria, a small study from Korea suggests. The researchers highlighted ... Read more

February 27, 2020February 27, 2020

Fintepla Cuts Lennox-Gastaut Drop Seizure Frequency, Trial Shows

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Fintepla (ZX008), an investigational therapy from Zogenix, significantly lowered the frequency of drop seizures and was well tolerated in children and adults with Lennox‑Gastaut syndrome, according to topline results ... Read more

February 13, 2020February 13, 2020

Researchers Pinpoint Novel Genetic Variant as the Cause for LGS and Mild Intellectual Impairments in Korean Family

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A previously unknown inherited variation of a gene linked to Lennox-Gastaut Syndrome (LGS) was found as the underlying cause of the condition and mild intellectual disabilities in three generations ... Read more

February 6, 2020February 6, 2020

Distinct Mutations in Calcium Channel Gene May Lead to LGS, Study Suggests

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Distinct mutations in the CACNA1A gene — which contains instructions for producing a subunit of CaV2.1, a calcium channel key to nerve cell communication — are associated with Lennox-Gastaut ... Read more

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