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Introducing Dravet Syndrome Foundation
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
Enter the Dravet Syndrome Foundation (DSF).
DSF is a nonprofit organization that acts as a convener of the Dravet syndrome community. Since their founding in 2009, they have engaged and educated all of their community stakeholders – patient families, clinicians, researchers, industry partners, and others – to envision and fight for better treatments, and one day a cure for Dravet syndrome.
They believe that efforts to improve the quality of life for those affected by Dravet syndrome must include the patient's voice and experience to help guide outcomes. DSF is proud to be the largest non-governmental funder of Dravet syndrome research, worldwide.
DSF’s steadfast commitment to advancing Dravet syndrome research, as well as our community’s engagement throughout the clinical trial and drug development process, has helped enable three new treatments for the disease, with several additional clinical trials already underway or soon starting. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of Diacomit® (stiripentol) Epidolex® (cannabidiol), and Fintepla® (fenfluramine).
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.
Connect to learn more:
Website: https://dravetfoundation.org/
Facebook: @DravetSyndromeFoundation
X: @curedravet
IG: @dravetsyndromefoundation
Email: [email protected]
Phone: (203) 392-1955
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
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By ABCs of Disability Planning
5
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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
Enter the Dravet Syndrome Foundation (DSF).
DSF is a nonprofit organization that acts as a convener of the Dravet syndrome community. Since their founding in 2009, they have engaged and educated all of their community stakeholders – patient families, clinicians, researchers, industry partners, and others – to envision and fight for better treatments, and one day a cure for Dravet syndrome.
They believe that efforts to improve the quality of life for those affected by Dravet syndrome must include the patient's voice and experience to help guide outcomes. DSF is proud to be the largest non-governmental funder of Dravet syndrome research, worldwide.
DSF’s steadfast commitment to advancing Dravet syndrome research, as well as our community’s engagement throughout the clinical trial and drug development process, has helped enable three new treatments for the disease, with several additional clinical trials already underway or soon starting. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of Diacomit® (stiripentol) Epidolex® (cannabidiol), and Fintepla® (fenfluramine).
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.
Connect to learn more:
Website: https://dravetfoundation.org/
Facebook: @DravetSyndromeFoundation
X: @curedravet
IG: @dravetsyndromefoundation
Email: [email protected]
Phone: (203) 392-1955
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
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