Dravet syndrome and parent associations: the IDEA League experience with comorbid conditions, mortality, management, adaptation, and grief.

@article{Skluzacek2011DravetSA,
  title={Dravet syndrome and parent associations: the IDEA League experience with comorbid conditions, mortality, management, adaptation, and grief.},
  author={Joan V Skluzacek and Kathryn P Watts and Olivier Parsy and Beverly Wical and Peter R Camfield},
  journal={Epilepsia},
  year={2011},
  volume={52 Suppl 2},
  pages={95-101}
}
The advent of social networking via the Internet and the commercial availability of tests for SCN1A mutations permitted the rapid development and growth of parent-led associations that provide advocacy and support, as well as promote education and research regarding Dravet syndrome (DS) in the last 10 years. The International Dravet syndrome Epilepsy Action League (IDEA League) is a partnership of parents and professionals united in the purpose of creating greater awareness and understanding of… CONTINUE READING