Dravet Syndrome News

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

March 30, 2021March 30, 2021

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Dravet Syndrome News

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of ... Read more

March 23, 2021March 23, 2021

In 1st Strategic Plan, DSUK Focuses on Research, Awareness, Education

Dravet Syndrome News

In its 13th year, the nonprofit Dravet Syndrome UK (DSUK) — which seeks to improve the lives of those affected by the epilepsy disorder — has introduced its first strategic ... Read more

March 16, 2021March 16, 2021

Foundation Promoting New Dravet ICD-10 Codes

Dravet Syndrome News

The Dravet Syndrome Foundation (DSF) is promoting awareness of the new global health statistics codes now in effect for Dravet syndrome. Known as “ICD-10” codes, the designations could bring about ... Read more

March 9, 2021March 9, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Dravet Syndrome News

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 9, 2021March 10, 2021

UK Survey: Risks of Severe Outcomes from COVID-19 Not Increased Significantly

COVID-19 News, Dravet Syndrome News

The risk of severe COVID-19 outcomes does not appear to increase in people with Dravet syndrome, although they still may need additional medical attention, according to the results of a ... Read more

March 8, 2021March 8, 2021

The Arc Awarded Comcast NBCUniversal Grant for Special Education Initiative

Dravet Syndrome News

A $200,000 Comcast NBCUniversal grant has been awarded to The Arc to increase access to educational resources for students of color and economically disadvantaged youngsters with intellectual and developmental disabilities ... Read more

March 2, 2021March 2, 2021

Jazz Pharma to Gain Access to Epidiolex in $7.2B Acquisition of GW Pharma

Dravet Syndrome News

Jazz Pharmaceuticals is set to acquire GW Pharmaceuticals and gain access to a diversified pipeline of cannabis-based medications, including Epidiolex (cannabidiol), which is approved to treat seizures in patients with ... Read more

February 25, 2021February 25, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Dravet Syndrome News

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 23, 2021February 23, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Dravet Syndrome News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 23, 2021February 23, 2021

Proposed Maryland Law Would Create ‘Seizure Safe Schools’

Dravet Syndrome News

If a Maryland bill called Brynleigh’s Act becomes law, the state will join five others — all of which have passed “seizure safe schools” measures — in making sure every ... Read more

February 16, 2021February 17, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Dravet Syndrome News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 16, 2021February 16, 2021

Eurodis Survey: Healthcare Experience Worse for Rare Disease Patients

Dravet Syndrome News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 16, 2021February 16, 2021

Diacomit Safe, Effective at Easing Seizures in Clinical Use Reaching Out 2 Years

Dravet Syndrome News

Diacomit (stiripentol) is safe and effective at reducing the frequency of different types of seizures in people with Dravet syndrome when used routinely, including up to about two years, according to ... Read more

February 10, 2021February 10, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Dravet Syndrome News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more