Children with Lennox-Gastaut syndrome, and their families and caregivers can now access the first Amazon Alexa skill — called Ella the Jellyfish — that’s designed to provide support and compassion for all members of this community. The Alexa skill was developed by Eisai based on the input from…
News
The National Institute of Health and Care Excellence (NICE), an arm of the United Kingdom’s public health system, favors use of the oral cannabidiol solution Epidyolex as an add-on to clobazam to treat seizures associated with Lennox Gastaut syndrome (LGS) and Dravet syndrome in patients in…
Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. Disorder: The Rare Disease Film Festival strives to eventually host a film about every one of the nearly 7,000 rare…
Onfi (clobazam), as an adjunct seizure treatment for Lennox-Gastaut syndrome (LGS), significantly reduced the number of weekly drop seizures and its effects were maintained in some patients for up to five years, a study summarizing clinical evidence reports. The study, “…
Zogenix has enrolled the last patient in a Phase 3 clinical trial evaluating its lead investigational candidate Fintepla (ZX008) as an add-on therapy for seizures associated with Lennox‑Gastaut syndrome (LGS), the company has announced. The study’s top-line data are expected in the first quarter of next year. Fintepla,…
Long-term treatment with the investigational oral therapy soticlestat (OV935/TAK-935) can reduce the median seizure frequency by up to 90% in adults with Lennox-Gastaut syndrome (LGS) and other developmental and epileptic encephalopathies (DEE), according to data from the ENDYMION Phase 2 trial. Topline results are expected in the…
The European Commission has approved Epidyolex (cannabidiol, CBD) as an add-on therapy to clobazam to treat seizures associated with Lennox‑Gastaut syndrome (LGS) and Dravet syndrome in patients 2 and older. Epidyolex — which is the first CBD product to be approved by the European Medicines Agency (EMA)…
Recent
- Taking Time to Acknowledge Our Efforts as Parents and Caregivers
- Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
- Brian Is a Happy Little Man
- Pandemic Won’t Stop Rare Disease Day on Feb. 28
- I’m Ready to Embrace My Emotions as an LGS Caregiver
- International Epilepsy Day Shines Spotlight on Brain Disorder Affecting Millions
- NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
- Jazz Acquires GW Pharma and Epidiolex, Other Potential Cannabinoids
- Study Reveals Molecular Details of Epidiolex Action
- This Is Why I Had to Sign Off