The add-on anti-seizure therapy Inovelon (rufinamide) shows good tolerability, with one year of treatment not affecting cognitive abilities, adaptive skills, or behavior in children and adults with Lennox-Gastaut syndrome (LGS), a study from Italy reported. The study, “…
News
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
Epidiolex (cannabidiol) treatment led to lithium toxicity in a boy with Lennox-Gastaut syndrome (LGS), demonstrating a previously unknown, harmful interaction between these two therapies, a case study reports. Given the lack of information about interactions between…
A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…
The Australian Therapeutic Goods Administration (TGA) has approved Epidyolex (cannabidiol) as a treatment for seizures associated with Lennox-Gastaut syndrome (LGS) or Dravet syndrome in patients 2 or older, according to developers GW Pharmaceuticals. In order to make Epidyolex available to Australian patients,…
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…
Eton Pharmaceuticals has submitted a new drug application (NDA) for topiramate oral solution — an anticonvulsant formerly known as ET-101 — to the U.S. Food and Drug Administration (FDA). The NDA covers three indications: as an add-on therapy for treatment of partial-onset seizures, including…
The Scottish Medicines Council (SMC) approved Epidyolex (cannabidiol), combined with the anti-epileptic medicine clobazam, as a treatment option for children and adults with Lennox-Gastaut or Dravet Syndrome.
A European Medicines Agency (EMA) committee has recommended that the age range of Fycompa (perampanel) be expanded in the European Union (EU) to include children 4 and older with focal-onset seizures and those 7 and older with primary generalized tonic-clonic seizures (PGTCS). In the EU, Fycompa — available in…
Recent Posts
- Advocates to mark International LGS Awareness Day on Nov. 1
- Brain surgery cuts seizures by half in nearly 70% of LGS cases, analysis finds
- Insurance barriers among systemic challenges for LGS families
- Mister Rogers said, ‘Look for the helpers.’ My son, Jeff, was a helper.
- Approved LGS therapy may safely reduce convulsive seizures in adults