SCHEDULE

The PHACE Syndrome Community extends a heartfelt thank you to our sponsors:
PLATINUM:
GOLD:
Children's Hospital of Wisconsin
(also our Research Meeting Partner)
SILVER:
Tentative Agenda for 2014 Conference
Thursday June 19, 2014
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9:00 Welcome: Jen Meints, President, PHACE Syndrome Community
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9:15 PHACE Syndrome Community Foundation: Janet and Andrew Ziffer
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9:30 Overview of PHACE syndrome and Current Diagnostic Protocols: Ilona Frieden, MD, University of California-San Francisco
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10:30 Break
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11:00 PHACE Research and Genetics Updates: Dawn Siegel, MD, Children’s Hospital of Wisconsin
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12:00 Lunch
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1:00 Team Care for PHACE syndrome and Care Coordination: Marcia Seefeldt, RN, BSN, Children’s Hospital of Wisconsin
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2:00 Protecting your child’s privacy and medical information in the era of social media: Travis Good, MD, Co-Founder, Catalyze
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3:00 Break
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3:30 Patient / Family Panel
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4:30 Adjourn
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TBD Family Dinner
Friday June 20, 2014
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8:30 Current practices in Hemangioma Management in patients with PHACE: Beth Drolet, MD, Children’s Hospital of Wisconsin
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9:00 PHACE Research Meeting Update: Beth Drolet, MD, Children’s Hospital of Wisconsin
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9:30 Management of Headaches/Migraines in PHACE: Geoffrey Heyer, MD, Nationwide Children’s Hospital
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10:30 Current Practices in Neuroimaging Cerebrovascular Anomalies in PHACE: Darren Orbach, MD, Boston Children’s Hospital
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11:30 Panel Discussion on Guidelines for Neuroimaging: Drolet, Heyer, Orbach
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12:00 Lunch
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1:30 Roundtable Discussions
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Cardiology/Cardiothoracic Surgery: TBD
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Plastic/Reconstructive Surgery: John Jensen, MD, Children’s Hospital of Wisconsin
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Feeding/swallowing difficulties and management: Joan Arvedson, PhD, CCC, Children’s Hospital of Wisconsin
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Psychological and developmental concerns/coping with facial difference/self-image: Patricia Marik, PsyD, Children’s Hospital of Wisconsin
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Management of Airway hemangiomas, and ear/hearing issues: Bob Chun, MD, Children’s Hospital of Wisconsin
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3:00 Break
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3:30 PHACE Syndrome Community Annual Meeting and Future Directions
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4:15 Open Discussion
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4:30 Adjourn - Dinner (on your own)
Saturday June 21
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TBD PHACE Family Social Event
Thank You to our 2014 Conference Sponsors:
