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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)

Knowledge Is The
Antidote For Fear

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Child Neurology Foundation SUDEP Symposium

Saturday, October 07, 2017
12:30 PM - 04:30 PM
Sheraton Hotel at Crown Center
2345 McGee St
Kansas City , MO 64108



Danny Did is the lead advocate partner to this SUDEP symposium and education initiative, which brings together healthcare providers, families, and advocates.

DETAILS: This four-hour symposium will bring together healthcare providers, families, and advocates. Several members of the DDF family will be presenting. 

Topics to be included in the symposium include:

  • Overview of SUDEP, including key risk factors and prevention strategies
  • Review current SUDEP research findings
  • Patient and family stories of living with knowledge of SUDEP risk
  • Communication techniques for engaging in difficult conversations without creating fear

Since 2015, the Child Neurology Foundation (CNF) hosts a half-day symposium during the Child Neurology Society (CNS) meeting that provides CME in a non-traditional CME format. Each year, the symposium brings together parents, patients, advocates, and fellow physicians to provide a unique education experience. This symposium has become popular since its inception, selling out the past two years.

Additional SUDEP Education Efforts

To gain a deeper understanding of family experience and awareness around SUDEP, CNF is collaborating with the Danny Did Foundation and several other organizations to survey families. Simultaneously, due to its partnership with CNS, a survey will be distributed to CNS members to determine SUDEP knowledge and the causes of their hesitancy to disclose the risk of SUDEP. Initial findings from these surveys will be shared at the SUDEP symposium and will be used to help develop future programming. CNF’s goal is to increase child neurologists’ understanding of SUDEP and the rate of SUDEP disclosure to families.

Additional educational efforts will include enduring education material and a November 2017 webinar geared to families.

CNF asserts the critical value of child neurology professionals, advocates and parents working as partners in the delivery of quality care to every child. To that end, all CNF’s educational modalities are interdisciplinary and bring stakeholder groups together to educate one another.

We believe this is a vital contribution to the child neurology community, as it addresses the chasm often existing between these groups regarding key issues, such as treatment options, services, and goals of care.

To learn more about this effort, click here

 
 

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