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What is Dravet syndrome?
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700. [1]
News & Updates
Party in Your PJs Virtual Event
Party in Your PJs for Dravet! Mark your calendars and join DSF [...]
Community Spotlight
Meet Nathan! In this Community Spotlight meet Nathan Blatt. On May 23rd, [...]
Educational Webinar Series
Caring for a loved one with Dravet syndrome or another DEE Caring [...]
Call for Research Proposals
Applications Due September 10, 2021 The 2021 DSF Research Grant Program is [...]
An Update On Our Staff
Thank You Wendy! Please join us in thanking Wendy Fry for her [...]
Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.
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Virtual Fundraising Event
june
junDravet Syndrome Awareness MonthMonth Long Event (june)(GMT-04:00) View in my time
Event Details
Dravet Syndrome Awareness Month takes place each June in the U.S. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that
Event Details
Dravet Syndrome Awareness Month takes place each June in the U.S.
By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families. This year’s theme is: Join the Fight!
Your support and hard work has been instrumental in the progress made for our patient community in the last decade. Now more than ever, we need your help! Please commit to Join the Fight in one or more ways this June. #fightdravet
Time
Month Long Event (june)(GMT-04:00) View in my time
Event Details
Join our June FIGHT FOR A CURE fundraiser. Set up a Facebook fundraiser or a personal fundraiser page. Funds raised will support our research program which has accelerated our understanding of
Event Details
Join our June FIGHT FOR A CURE fundraiser. Set up a Facebook fundraiser or a personal fundraiser page. Funds raised will support our research program which has accelerated our understanding of Dravet syndrome and helped bring new treatments to market. #fightdravet
Time
Month Long Event (june)(GMT-04:00) View in my time
15junAll DayDravet Remembrance Day(All Day: tuesday)(GMT-04:00) View in my time
Event Details
Our 1st annual Dravet Remembrance Day will take place on June 15th and will be a time for our community to reflect and remember those who we have lost to
Event Details
Our 1st annual Dravet Remembrance Day will take place on June 15th and will be a time for our community to reflect and remember those who we have lost to Dravet syndrome.
Submit your loved one’s name here for inclusion on our virtual Remembrance Wall. #dravetremembranceday
Time
All Day (Tuesday)(GMT-04:00) View in my time
Related Events
Event Details
On June 23rd, we are joining our advocacy partners and families from around the world in raising awareness of Dravet Syndrome Awareness Day. This year’s Dravet Syndrome Awareness Day falls
Event Details
On June 23rd, we are joining our advocacy partners and families from around the world in raising awareness of Dravet Syndrome Awareness Day. This year’s Dravet Syndrome Awareness Day falls on the day before the start of DSF’s 2021 virtual conference. #dravetawarenessday
Time
All Day (Wednesday)(GMT-04:00) View in my time
Event Details
Join us on June 24-26, 2021! Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due
Event Details
Join us on June 24-26, 2021!
Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridge the gap until we can meet again in person next year at Cook Children’s Medical Center.
The live presentations at this year’s event will center on new treatments and research. We will also offer an on-demand series of videos on a variety of topics relating to caregiver concerns. Live presentations will be recorded, and those along with our on-demand videos will be available to registered participants through September 30, 2021.
Time
june 24 (Thursday) - 26 (Saturday)(GMT-04:00) View in my time
Event Details
Join us on June 30, 2021 for an educational opportunity! Title: Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance
Event Details
Join us on June 30, 2021 for an educational opportunity!
Title: Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All
Time/Date: Wednesday, June 30th, 2021
11:00 am – 12:00 PM ET
Speakers:
- Elizabeth Thiele MD, PhD, Director, Pediatric Epilepsy Program, Director, Carol and James Herscot Center for Tuberous Sclerosis Complex Massachusetts General Hospital Professor of Neurology Harvard Medical School
- Erin Fonseca, RN, BSN Nurse Coordinator, The Herscot Center at Massachusetts General Hospital
Time
(Wednesday) 11:00 am - 12:00 pm(GMT-04:00) View in my time
july
Meet our superheroes who fight every day against Dravet!
Find out how to help us in the fight to cure Dravet syndrome