Developing Effective Transition of Care for Dravet Syndrome in Adulthood

2022 Dravet Syndrome Foundation Biennial Family and Professional Conference
June 23-25, 2022

Apply Here Through April 30th!

Dravet syndrome is a developmental epileptic encephalopathy with onset in infancy that persists into adulthood. Transition of care from pediatric to adult providers remains one of the most significant barriers to appropriate management as reported by patients and caregivers. Care of the individual with Dravet syndrome requires knowledge of the disease, including understanding of multiple comorbid conditions and the latest therapeutic advancements.

Every two years, the Dravet Syndrome Foundation hosts a Family and Professional Conference to foster collaboration and share knowledge on the latest advancements in this condition with professionals, patients, and caretakers. Thanks to these advancements in diagnosis and therapy, the majority of people with Dravet syndrome grow up to be adults. Now, more than ever, it is essential that we engage our adult neurology colleagues in the fight against this condition.

As part of the 2022 DSF Family and Professional Conference to be held in Fort Worth, TX, the organizers (Drs. Scott Perry, Danielle Andrade, and Fabio Nascimento) are offering a program designed for adult neurology providers and trainees who have interest in Dravet syndrome or wish to learn about the condition in an effort to foster opportunities for effective transition of care in adulthood. A limited number of scholarships are available to support travel/lodging/meals at the 2022 conference through this program.

Application Criteria

APPLICATIONS ARE DUE BY APRIL 30, 2022

  1. Adult Epilepsy trainees (epilepsy/neurophysiology fellows) or practicing providers (MD/DO) with interest in learning about Dravet syndrome.
  2. Current resident of the US or Canada.
  3. Submission of baseline application.
  4. As part of the program, participants will be asked to complete a pre- and post-conference survey measuring knowledge of Dravet syndrome.
  5. Willingness to participate in full day CME course (6/24) and ½ day mini course (6/25) focused on transition of care for adults with Dravet syndrome.

Scholarship: Applicants who successfully complete program requirements will receive reimbursement for coach airfare. DSF will make arrangements in advance to cover lodging at the host hotel (Worthington Renaissance Fort Worth), registration, and meals during the conference. Notice of award for these scholarships will be sent by May 15, 2022.

Agenda

DateTimeActivity
Thursday, June 23Arrivals in the evening, pre-test completed and turned in at registration following day
Friday, June 248:00am-5:00pmDSF 2022 CME Program – Worthington Renaissance Conference Center (agenda here)
5:00pm-6:30pmSocial Hour – Come enjoy appetizers and drinks with conference faculty
Saturday, June 258:00am-12:00pmTransition of Care Symposium
8:00am-8:30amAdult Transition Clinics for Dravet – Lesson Learned: Danielle Andrade MD/Scott Perry MD: This session will review varied approaches, successes, and failures from an adult and pediatric epileptologist with established transition clinics.
8:30am-9:00amStarting a Transition Clinic from Scratch – Fabio Nascimento MD: This session will share the experiences of a recent fellowship graduate starting a transition clinic for Dravet from the ground up.
9:00am-10:00amFamily and Sibling project data discussion – Laurie Bailey, Medical Advocacy and Engagement, Zogenix: This session will share early findings from a project gathering insight from caregivers, parents, and siblings on the unique challenges caring for an adult with Dravet Syndrome.
10:00am-10:30amBreak
10:30am-11:30amCase Presentations
11:30am-12:00pmPost Test and Lunch
Departures
Apply Here Through April 30th!