Dravet Syndrome News

June 15, 2021June 15, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 8, 2021June 9, 2021

Zogenix Opens Photo Contest to Benefit Advocacy Groups

Dravet Syndrome News

The biopharmaceutical company Zogenix is introducing a Dravet syndrome community photo-sharing campaign and contest to benefit the Dravet Syndrome Foundation and the Epilepsy Foundation. U.S. families of Dravet patients whose ... Read more

June 8, 2021June 8, 2021

Rare 2030 Action Campaign Pushing for European Plan for Rare Diseases

Dravet Syndrome News

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in ... Read more

June 2, 2021June 2, 2021

Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill

Dravet Syndrome News

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in ... Read more

June 1, 2021June 1, 2021

Supporters Set to ‘Join the Fight’ During Awareness Month

Dravet Syndrome News

Activities ranging from submitting names for a virtual remembrance wall to swapping out Facebook photo frames are on tap for Dravet Awareness Month, set aside each June to call attention ... Read more

May 25, 2021May 25, 2021

Takeda Closes Deal With Ovid for Soticlestat

Dravet Syndrome News

Ovid Therapeutics has closed an agreement under which Takeda Pharmaceuticals will secure global rights to develop and market the investigational oral therapy soticlestat (previously TAK-935/OV935) for two rare epilepsy syndromes, one ... Read more

May 18, 2021May 18, 2021

Ataluren Fails to Lower Seizure Frequency in Children in Small Trial

Dravet Syndrome News

Ataluren, in development by PTC Therapeutics as a possible treatment for Dravet syndrome, showed an acceptable safety profile in a small clinical trial. That trial, conducted at a single site ... Read more

May 11, 2021May 11, 2021

Zogenix Launches Global Program to Boost Access to Fintepla

Dravet Syndrome News

Zogenix has launched a global access program for Fintepla (fenfluramine) to make the medication available to more patients with Dravet syndrome. In the United States and the European Union, Fintepla ... Read more

May 4, 2021May 4, 2021

Model Using Brain Signals May Work as Early Warning System for Seizures

Dravet Syndrome News

Researchers have developed a mathematical model to identify electrical signal patterns in the brain that predict epileptic seizures in advance, of benefit to people with seizure-related disorders such as Dravet ... Read more

April 27, 2021April 27, 2021

Envision Will Study Dravet Natural History in Children to Learn Impact

Dravet Syndrome News

The first participant has been enrolled in Envision, a natural history study that will follow children with Dravet syndrome for more than two years as it seeks to shed light ... Read more

April 21, 2021April 21, 2021

Quick Approval Given COVID Vaccines Raise Concerns, Rare Disease Patients Say

Dravet Syndrome News

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine ... Read more

April 20, 2021April 20, 2021

#AANAM – Caregivers Tie Fintepla to Quality-of-life Improvements

Dravet Syndrome News

Caregivers of children with Dravet syndrome who are taking Fintepla (fenfluramine) report sustained seizure reductions and quality-of-life improvements, among other benefits, according to a recent study. These findings were presented ... Read more

April 15, 2021April 15, 2021

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

Dravet Syndrome News

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a ... Read more

April 13, 2021April 13, 2021

COVID-19 Vaccines Safe for Dravet Patients, UK Survey Suggests

COVID-19 News, Dravet Syndrome News

Vaccines against COVID-19 appear to be safe and well-tolerated in patients with Dravet syndrome, a U.K. survey indicates. A brief report on the survey’s top results was announced recently by ... Read more

April 6, 2021April 6, 2021

Takeda Buys Global Rights to Soticlestat for Rare Epileptic Disorders

Dravet Syndrome News

Takeda Pharmaceuticals has acquired the global rights to develop and market the investigational oral therapy soticlestat (OV935/TAK-935) for developmental and epileptic encephalopathies, including Dravet syndrome, the company has announced. Soticlestat was originally ... Read more