Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening ... Read more
Updates
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Researchers Pinpoint Novel Genetic Variant as the Cause for LGS and Mild Intellectual Impairments in Korean Family
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 ... Read more -
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. ... Read more -
With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus
The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business ... Read more -
Distinct Mutations in Calcium Channel Gene May Lead to LGS, Study Suggests
Distinct mutations in the CACNA1A gene — which contains instructions for producing a subunit of CaV2.1, a calcium channel key to nerve cell communication ... Read more
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Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
An abundance of events are afoot around the world to mark Rare Disease Day ... -
Christianson Syndrome Unexpectedly Identified as LGS Cause in Two Children, Case Study Reports
Christianson syndrome, a genetic nervous system disorder not normally associated with Lennox-Gastaut syndrome (LGS), ... -
FDA Approves Valtoco Nasal Spray for Treating Seizure Clusters
The U.S. Food and Drug Administration (FDA) approved Neurelis’ Valtoco (diazepam nasal spray) as a rescue ... -
Fycompa as Add-on Treatment Helps Lower Seizures in LGS Patients, Study Suggests
Using Fycompa (perampanel) — an approved anti-seizure treatment for certain types of epilepsy — ... -
People With Late-Onset LGS May Maintain Their Cognitive and Functional Abilities, Study Finds
People who start showing signs of Lennox-Gastaut syndrome later in life seem to be ... -
NHS Allows Adding Epidyolex, Cannabidiol Oral Solution, to Treat Lennox-Gastaut Patients in England
Starting on Jan. 6, physicians in England will be able to prescribe the oral ...
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