Using the cannabidiol Epidiolex in combination with Diacomit (stiripentol) or Depacon (sodium valproate) — two anti-epileptic treatments — does not seem to raise major safety concerns among patients with seizures caused by conditions such as Lennox-Gastaut syndrome (LGS), a Phase 2 study…
News
Oral treatment with cannabidiol (CBD) is associated with a greater likelihood of adverse events and treatment withdrawal in children with rare forms of epilepsy, including those with Lennox-Gastaut syndrome, but appears safe for other indications, a review of clinical trials shows. This is likely because childhood epilepsy patients…
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…
Two individuals with Lennox-Gastaut syndrome (LGS) who had masses on their tongues, presumably as a result of tongue biting during seizures, were described in a new case report. These cases highlight the importance of regular dental examinations for people with LGS — particularly those who may have difficulty…
A minimally invasive surgery using lasers to sever connections between the two halves of the brain can effectively and safely lower seizure frequency in people with Lennox-Gastaut syndrome (LGS) who do not respond to medications, a study suggests. This surgery is relatively new, and seen as a potential option to…
The United Kingdom Home Office has reclassified Epidyolex (cannabidiol, or CBD) as a Schedule 5 drug, making it easier to obtain for patients with rare epileptic disorders such as Lennox-Gastaut syndrome. Epidyolex (known as Epidiolex in the U.S.) is an oral cannabidiol solution derived from the cannabis,…
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…
A single gene therapy treatment using microRNAs improved growth and development, and decreased lethal seizures in a mouse model of Lennox-Gastaut syndrome (LGS), a study has found. This proof-of-principle experiment supports the development of targeted therapies to help manage epilepsy and improve the quality…
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.
Mice created with a single mutation found in a person with Lennox-Gastaut syndrome showed all the hallmarks of the condition, including the same seizure types, and were successfully treated with anti-epileptic medications, a study has found. This mouse strain represents a…
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