PHACE Syndrome: the Families, the Physicians, and the Facts

July 13, 2010 by admin  
Filed under Events

PHACE Syndrome: the Families, the Physicians, and the Facts

 

September 16th & 17th, 2010

Milwaukee, WI

 

This conference is sponsored by: Children’s Hospital of Wisconsin, Medical College of Wisconsin, the National Organization of Vascular Anomalies, and HIG (Hemangioma Investigator Group)

 

Schedule for the Family Conference

  • Thursday, September 16, 2010
    • 12:30 Registration/Event Check-In
    • 1:00-5:00 Family Conference
    • Following the conference: Family dinner and social event
  • Friday, September 17, 2010
    • 8:30 Continental breakfast
    • 9:30-3:30 Family Conference (includes luncheon)

 

Event Highlights

2 day Educational Conference:

  • Overview and update on PHACE syndrome
  • Radiology imaging in PHACE syndrome
  • Neurological issues that can be a challenge to individuals with PHACE
  • Treatment and management guidelines
  • Social implications of facial differences
  • Laser therapy for hemangiomas
  • Research update

Social Event Thursday Evening with dinner

(Reception, Dinner and Entertainment tentatively set at Betty Brinn Children’s Museum)

 

Registration

  • Cost: Free for PHACE families and includes everything listed in this section
  • How to register: To register electronically E-mail: jlehman@mcw.edu and request a registration form or call Jennefer at 414-955-2818 and you can register over the phone. Registration deadline is August 13th, 2010.
  • All educational sessions on Thursday & Friday
  • Written educational materials about PHACE syndrome
  • Childcare for children 2-8 years old during educational sessions
  • Reception, dinner and entertainment on Thursday evening
  • Light breakfast on Friday morning from 8:30-9:30
  • Lunch on Friday
  • There is no charge to the families for anything listed in this section

 

Why Attend?

There are many reasons to attend the PHACE conference. Here are just a few of them:

  • Attendees will leave with a wealth of knowledge about PHACE syndrome
  • Opportunities to meet other families facing similar challenges
  • Exchange ideas, support and advice

 

Who Should Attend?

This conference is designed for families of children with PHACE syndrome or anyone that is interested in the care of children with PHACE syndrome from newly diagnosed to the latest research available.

 

Speakers & Panelists

Denise Adams, MD - University of Cincinnati College of Medicine, Cincinnati Children’s Hospital

Beth Drolet, MD – Medical College of Wisconsin, Children’s Hospital of Wisconsin

Jen Duncan, Director/Founder at PHACE Syndrome Community

Ilona Frieden, MD - University of California, San Francisco

Maria Garzon, MD – Columbia University, Morgan Stanley Hospital

Karla Hall – Executive Director NOVA

Christopher Hess, MD, PhD – University of California, San Francisco

Jennifer Hoag, PhD - Medical College of Wisconsin, Children’s Hospital of Wisconsin

Jensen, John, MD - Medical College of Wisconsin, Children’s Hospital of Wisconsin

Craig Johnson, DO – Medical College of Wisconsin, Children’s Hospital of Wisconsin

Patricia Marik, Psy D - Medical College of Wisconsin, Children’s Hospital of Wisconsin

Denise Metry, MD - Baylor College of Medicine, Texas Children’s Hospital

Orbach, Darren, MD, PhD – Harvard Medical School, Children’s Hospital Boston

Dawn Siegel, MD – Medical College of Wisconsin, Children’s Hospital of Wisconsin

Other Speakers TBD

 

Conference location

The conference takes place at the Children’s Health Education Center located at

1533 N. RiverCenter Dr.

Milwaukee, WI  53212

(414)765-9355 phone

Map available at this website

http://www.chw.org/display/PPF/DocID/20530/router.asp

 

Where to Stay?

Comfort Inn Downtown Lakeshore: Rooms $79 plus tax. Has a shuttle to/from Children’s Health Education Center for families. No pool. There is a block of rooms set aside. Address:  916 East State Street, Milwaukee, WI, US, 53202 Phone: (414) 276-8800. Mention PHACE conference for discount room rate. Deadline for this rate is August 15, 2010.

There are many other hotels in the area also.

 

We have also secured discounted passes for the Paradise Landing Indoor Waterpark for $10 each, at the nearby Hilton Milwaukee City Center downtown. The passes are available for use that Friday from 3-10pm and Saturday from 9am-10pm. Just mention that you are with the PHACE/Children’s Hospital Group when you purchase the passes at the water park.

 

 

 

NOVA is a 501c3a organization. All donations are tax deductible NOVA was originally founded as Hemangioma Newsline.
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