The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…
News
The U.S. Food and Drug Administration (FDA) has approved Lupin Limited’s generic medication, Rufinamide Oral Suspension, to be used as an add-on therapy to control seizures in adults and children, ages 1 and older, with Lennox-Gastaut syndrome (LGS), according to a press release. Rufinamide is a generic version…
Fintepla (fenfluramine) safely lowered the frequency of drop seizures — those where part or all of the body may become limp — in patients with Lennox-Gastaut syndrome (LGS), according to data from a Phase 3 trial. The study (NCT03355209) also showed the medication was able to lower…
Researchers have developed a new “hard-stop alert” that pops up when clinicians are trying to prescribe carbohydrate-containing medications to hospitalized children on a keto diet — a ketogenic eating plan that is high-fat and low-carb. Notably, this type of diet is recommended for patients with treatment-resistant epilepsy, such as…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…
When given as an add-on therapy, Epidiolex (cannabidiol, CBD) can lower the frequency of seizures in young patients with Dravet and Lennox‐Gastaut syndromes — regardless of whether the children also are taking clobazam — a review has found. These findings suggest that Epidiolex may have…
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…
Adding Epidiolex, an oral cannabidiol medication, to other treatments successfully stopped epileptic seizures in a boy with Lennox-Gastaut syndrome (LGS), resulting in nearly normal electrical activity in the brain, a real-world case study reported. The case study, “…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
National Epilepsy Awareness Month is underway, with a variety of events and activities aimed at calling attention to diseases such as Dravet and Lennox-Gastaut syndromes, and to epilepsy in general. Patients, caregivers, and advocates around the U.S. will share educational information, host fundraisers, don purple gear,…
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