Soticlestat Reduces Seizure Frequency in Dravet Syndrome, Study Shows
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Soticlestat Reduces Seizure Frequency in Dravet Syndrome, Study Shows

Both Dravet syndrome and Lennox-Gastaut syndrome (LGS) are characterized by frequent and often severe seizures. In many cases, those affected require multiple medications to manage their condition and prevent epileptic…

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Nebraskans for Medical Marijuana Are Running Out of Time to Put Petitions on the Ballot Before November
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Nebraskans for Medical Marijuana Are Running Out of Time to Put Petitions on the Ballot Before November

  As time runs out, volunteer Dominic Gillen is running even harder. In an interview with KETV, he admits that they are not yet where they should be in order…

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Study of the Week: Whole Plant Cannabis Succeeds in Rare Childhood Epilepsies Where CBD and Others Fail
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Study of the Week: Whole Plant Cannabis Succeeds in Rare Childhood Epilepsies Where CBD and Others Fail

Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…

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Phase 2 Trial Shows Therapy Reduces Seizures in Dravet Syndrome and Lennox-Gastaut Syndrome

The American Academy of Neurology recently held their annual meeting virtually to discuss the latest research in Dravet Syndrome (DS) and Lennox-Gastaut Syndrome (LGS). This meeting was held April 17th through 22nd,…

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Four New Rare Disease Studies Receive $19 Million in Funding
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Four New Rare Disease Studies Receive $19 Million in Funding

The Patient-Centered Outcomes Research Institute (PCORI) has announced that it will be contributing funding for four new studies focused on four different rare diseases. The funding will top out at…

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CBD-Based Treatment for Rare Childhood Epilepsies Gets Recommendation from NICE
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CBD-Based Treatment for Rare Childhood Epilepsies Gets Recommendation from NICE

According to a story from BioPortfolio, the biopharmaceutical company GW Pharmaceuticals plc recently announced that its medicine Epidyolex has earned recommendation from the UK National Institute for Health and Care…

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Initial Trial Data Looks Promising for a Potential Treatment for Rare Epilepsies
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Initial Trial Data Looks Promising for a Potential Treatment for Rare Epilepsies

According to a story from sectorpublishingintelligence.co.uk, the drug company Ovid Therapeutics Inc. has recently announced that the early data from its phase 2 clinical trial is mostly encouraging. This clinical…

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A Nasal Spray Has Just Become the First New Therapy Approved by the FDA for Cluster Seizures in 20 Years

Cluster Seizures Approximately 1/3 of all epilepsy patients live with uncontrolled seizures. Of these, around 150,000 in the United States alone  experience cluster seizures (otherwise known as acute-repetitive seizures, crescendo…

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A Recap on 2018: Record Number of Drugs Approved by the FDA for Rare Diseases

Each year the Food and Drug Administration approves dozens of new therapies to fulfill unmet needs for various patient populations. It's just been published that in 2018 they approved a…

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