20/02/2024
Trunerox, which was developed by the Canadian biopharmaceutical Avicanna, is a proprietary oral formulation of 10% cannabidiol, or CBD. https://buff.ly/49lTRpq
Dravet Syndrome News
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Dravet Syndrome News is a digital news publication dedicated to offering comprehensive daily news coverage of Dravet Syndrome.
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19/02/2024
As columnist Meagan Cheney's son is evaluated for ADHD, he raises questions about disability, given his sister's experiences with Dravet. https://buff.ly/49CpqLi
13/02/2024
Encoded Therapeutics is now cleared to launch Phase 1/2 clinical trials of the Dravet syndrome gene therapy ETX101 in the U.S. and Australia. https://buff.ly/3uELPbV
06/02/2024
International Epilepsy Day this Feb. 12 aims to promote public understanding of epilepsy to gather support for a 10-year WHO roadmap on care. https://buff.ly/4890k5J
05/02/2024
Columnist Meagan Cheney says the staff at her daughter's school has gone above and beyond in preparing for her standardized tests. https://buff.ly/3HKWpkP
30/01/2024
An animal model study found Fintepla, an approved add-on therapy for seizure control, may offer an array of other benefits. https://buff.ly/48UOHQP
23/01/2024
Fintepla meaningfully lowered seizure frequency over one year in 60% of Dravet syndrome patients treated in a real-world clinical setting. https://buff.ly/3u2WvRA
18/01/2024
Columnist Meagan Cheney is rocked by a bad dream that reminds her of the daily seizures her daughter used to have due to Dravet syndrome. https://buff.ly/3vPGVZO
16/01/2024
Five young Dravet children treated with add-on Fintepla (fenfluramine) before age 2 showed reasonable safety and lower seizure rates. https://buff.ly/3RZ7EdV
16/01/2024
Help connect rare disease communities for more effective advocacy and support for all. Take our survey for a chance to win 1 of 10 $50 Amazon eGift cards: https://bit.ly/3vJk568
10/01/2024
Caregivers of Dravet patients in Spain report often turning to treatments like cognitive and physiotherapy, but benefits are not always clear. https://buff.ly/3Sc7H7t
02/01/2024
Available treatments aren't enough to fully control seizures for most people with Dravet syndrome, and many experience side effects. https://buff.ly/3S2vKFP
19/12/2023
Epidiolex, an approved CBD therapy for seizures in Dravet, may in rare cases cause side effects including clusters of seizures, per a study. https://buff.ly/3RPh3WG
18/12/2023
An outing to see Christmas lights is seizure-free for columnist Meagan Cheney's daughter. It was the best Christmas gift ever. https://buff.ly/481V98o
12/12/2023
Treatment with a procedure called transcranial static magnetic stimulation led to less seizure activity in a mouse model of Dravet syndrome. https://buff.ly/3GGTXuU
11/12/2023
Columnist Meagan Cheney celebrates all her daughter with Dravet has accomplished this year, including being able to read on her own. https://buff.ly/41f5b3t
05/12/2023
An update on open-label studies in young Dravet patients finds STK-001 markedly reduces seizure frequency, improves cognition and behavior. https://buff.ly/3t310Lk
28/11/2023
The cannabidiol Epidiolex was granted approval in Canada to treat seizures in patients ages 2 and older with Dravet or other epilepsies. https://buff.ly/3RmCmPj
21/11/2023
Diacomit helps to control seizures in people with Dravet and with other childhood disorders marked by hard-to-treat seizures, study reports. https://buff.ly/3QNIf6n
14/11/2023
Nighttime seizure monitoring devices are frequently used by Dravet caregivers to prevent SUDEP, according to a questionnaire-based study. https://buff.ly/47zAxDG
13/11/2023
Columnist Meagan Cheney, who's parenting a child with Dravet syndrome, says the importance of community can't be overstated. https://buff.ly/3FVDzX5
07/11/2023
Newer add-on medications for Dravet syndrome reduced seizure frequency in children by at least 50% versus placebos, a review study reported. https://buff.ly/47hqBOY
31/10/2023
People with Dravet syndrome due to mutations in the SCN1A gene are often affected by gastrointestinal and eating problems, a new study found. https://buff.ly/3QelQ1U
30/10/2023
As columnist Meagan Cheney ventures back into dating life, she's seeing it's different as a single mother of three kids, one with Dravet. https://buff.ly/3Mmj2Pk
24/10/2023
Most children with Dravet syndrome are diagnosed before 1 year of age, and about seven months from symptom onset, a caregiver survey finds. https://buff.ly/46ZZpUW
03/10/2023
A man in China was diagnosed with Dravet syndrome after an epileptic seizure that severely worsened existing walking and motor difficulties. https://buff.ly/3RHiWFe
26/09/2023
Side effects are more than twice as common in people who use cannabidiol (CBD) to treat some forms of epilepsy, including Dravet syndrome. https://buff.ly/3ZuOSP6
19/09/2023
Fintepla was found to significantly reduce seizure frequency in pediatric Dravet patients with hard-to-treat seizures in a Phase 3 trial. https://buff.ly/3Zoh4TG
11/09/2023
Despite her youngest daughter's Dravet syndrome diagnosis, columnist Megan Cheney is thrilled by the 8-year-old's progress. https://buff.ly/48779G7
05/09/2023
Fifty-two patients will be studied to see how safe and well tolerated LP352 is against a placebo and if it reduces how often seizures happen. https://buff.ly/3Z4aqSk
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