SCHEDULE

The PHACE Syndrome Community extends a heartfelt thank you to our sponsors:

 

 

PLATINUM:

 

Boston Children's Hospital

 

 

GOLD:

 

Children's Hospital of Wisconsin
(also our Research Meeting Partner)

 

Direct Supply Foundation

 

Culhane Meadows PLLC 

 

 

SILVER:

 

Complete Children's Health 

Tentative Agenda for 2014 Conference

 

Thursday June 19, 2014

  • 9:00 Welcome: Jen Meints, President, PHACE Syndrome Community

  • 9:15 PHACE Syndrome Community Foundation: Janet and Andrew Ziffer

  • 9:30 Overview of PHACE syndrome and Current Diagnostic Protocols: Ilona Frieden, MD, University of California-San Francisco

  • 10:30 Break

  • 11:00 PHACE Research and Genetics Updates: Dawn Siegel, MD, Children’s Hospital of Wisconsin

  • 12:00 Lunch

  • 1:00 Team Care for PHACE syndrome and Care Coordination: Marcia Seefeldt, RN, BSN, Children’s Hospital of Wisconsin

  • 2:00 Protecting your child’s privacy and medical information in the era of social media: Travis Good, MD, Co-Founder, Catalyze

  • 3:00 Break

  • 3:30 Patient / Family Panel

  • 4:30 Adjourn

  • TBD Family Dinner

 

Friday June 20, 2014

  • 8:30 Current practices in Hemangioma Management in patients with PHACE: Beth Drolet, MD, Children’s Hospital of Wisconsin

  • 9:00 PHACE Research Meeting Update: Beth Drolet, MD, Children’s Hospital of Wisconsin

  • 9:30 Management of Headaches/Migraines in PHACE: Geoffrey Heyer, MD, Nationwide Children’s Hospital

  • 10:30 Current Practices in Neuroimaging Cerebrovascular Anomalies in PHACE: Darren Orbach, MD, Boston Children’s Hospital

  • 11:30 Panel Discussion on Guidelines for Neuroimaging: Drolet, Heyer, Orbach

  • 12:00 Lunch

  • 1:30 Roundtable Discussions

    • Cardiology/Cardiothoracic Surgery: TBD

    • Plastic/Reconstructive Surgery: John Jensen, MD, Children’s Hospital of Wisconsin

    • Feeding/swallowing difficulties and management: Joan Arvedson, PhD, CCC, Children’s Hospital of Wisconsin

    • Psychological and developmental concerns/coping with facial difference/self-image: Patricia Marik, PsyD, Children’s Hospital of Wisconsin

    • Management of Airway hemangiomas, and ear/hearing issues: Bob Chun, MD, Children’s Hospital of Wisconsin

  • 3:00 Break

  • 3:30 PHACE Syndrome Community Annual Meeting and Future Directions

  • 4:15 Open Discussion

  • 4:30 Adjourn - Dinner (on your own)

 

Saturday June 21

  • TBD PHACE Family Social Event

Thank You to our 2014 Conference Sponsors:

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