International Dravet syndrome Epilepsy Action League
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Target demographics: Patients, caregivers and professionals around the world coping with the daily challenges of living with Dravet syndrome and closely related disorders.
Geographic areas served: International
Mission:
The IDEA League promotes awareness of and research for Dravet syndrome and related forms of epilepsy and provides resources and support to improve the quality of life for affected individuals and families. We strive to be the most up-to-date and accurate information source for Dravet syndrome and related conditions for both families and professionals.
Results:
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Thankful Mom
11/30/10
The IDEA League changed our lives. Before his diagnosis, our son was having many types of seizures, and more of them each day than we could count. There was almost never any real recovery between them. He had stopped using the few words he’d had left upon starting kindergarten. He was withdrawn, ...
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angie
11/29/10
This organization has changed our lives. The conference I attended just after my daughter's diagnosis at age 9 provided critical information to help us make her life better. I learned about Dravet syndrome, medication, social services and support services. Our family has made friends with other ...
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Pleased Grandma
11/27/10
This organization is a great support to my grandchild and family. They have been very helpful in giving a list of specialists and articles about Dravet Syndrome (SMEI).
We attended the conference to help with our grandchild and it was fabulous. It was very exciting to hear about new research ...
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