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The last email sent was missing the links to register.  After your hotel reservation is made, please don't forget to register for the conference at:

https://www.surveymonkey.com/s/LW7VG68

After your hotel reservation and conference registration is complete, the conference fee can be paid here via the "Donate" button:

http://www.phacesyndromecommunity.org/#!donate/c1ghi

We are looking forward to seeing everyone!!!

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Dear PHACE Families and Friends,

If you are planning to attend the PHACE conference in June, or even just thinking about it, we encourage you to contact the hotel to make your reservations NOW! There is a big convention in town that weekend and we want to make sure that all our PHACE families book their rooms in advance. We have a block of rooms set aside but once those fill up, we can't guarantee availability, and other hotels in the area are already full.  Our block of rooms for the conference is release the first week of May.

As a reminder, the conference is Thursday and Friday, June 19-20. The Family Fun Day will be Saturday June 21st at a local park (fun family picnic). Our room block starts on Wednesday night.

Please contact the Country Springs hotel directly at (800) 247-6640 or (262) 547-0201 to reserve your hotel rooms and mention that you are attending the PHACE conference. The per-night rate that we have negotiated for a room is $89 without water-park access, and $109 with water-park access.

Overview of conference:
 
Thursday June 19, 2014
  • Overview of PHACE syndrome and Current Diagnostic Protocols: Ilona Frieden, MD, University of California-San Francisco
  • PHACE Research and Genetics Updates: Dawn Siegel, MD, Children’s Hospital of Wisconsin
  • Team Care for PHACE syndrome and Care Coordination: Marcia Seefeldt, RN, BSN, Children’s Hospital of Wisconsin
  • Protecting your child’s privacy and medical information in the era of social media: Travis Good, MD, Co-Founder, Catalyze
  • Parent-Patient Panel
  • Family Dinner
 
Friday June 20, 2014
  • PHACE Research Meeting Update: Beth Drolet, MD, Children’s Hospital of Wisconsin, plus other members of the 2014 PHACE Syndrome Research Workshop
  • Management of Headaches/Migraines in PHACE: Geoffrey Heyer, MD, Nationwide Children’s Hospital
  • Current Practices in Neuroimaging Cerebrovascular Anomalies in PHACE: Darren Orbach, MD, Boston Children’s Hospital
  • Panel Discussion on Guidelines for Neuroimaging: Dr. Heyer, Dr. Orbach, and Chris Hess, MD
  • Roundtable Discussions
    • Cardiology/Cardiothoracic Surgery: Michael Mitchell, MD, Children’s Hospital of Wisconsin
    • 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
  • Hemangioma Treatment: Current practices in the use of steroids, propranolol, and laser treatment for children with PHACE synrome: Beth Drolet, MD, Children’s Hospital of Wisconsin
  • PHACE Syndrome Community Annual Meeting and Future Directions: Jen Meints, Jill Salas
 
Saturday June 21
  • PHACE Syndrome Community Family Social Event TBD

We look forward to seeing you there!!
The PHACE Conference Committee
 
Copyright © 2014 PHACE Syndrome Community, All rights reserved.


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