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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
We Want to Hear from You!
What makes a great rare disease community? Regardless of how you define community, there’s [...]
2021 Dravet Remembrance Wall
Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day [...]
2021 DSF Patient Assistance Grant Program
DSF has long recognized there is a significant financial burden, direct and indirect, for [...]
Board of Directors Update
We would like to give a special thanks Nicole Villas for volunteering on DSF’s [...]
New Clinical Study
Momentum 1 Phase 3 Clinical Trial New Clinical Study Offers Change to [...]
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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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 24th, 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 24th, 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 same day as the start of DSF’s 2021 virtual conference. #dravetawarenessday
Time
All Day (Thursday)(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
Meet our superheroes who fight every day against Dravet!
Find out how to help us in the fight to cure Dravet syndrome