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FAMILY CONFERENCE

Connect and Learn at the 2018 PHACE Family Conference

June 29-July 1, 2018

Join our community for the PHACE Syndrome Family Conference, where you and your child can connect with other PHACE families and learn from the leading doctors in the field. This year's conference will be held in Atlanta, Georgia at the DoubleTree Hotel from Friday, June 29 through Sunday, July 1. This bi-annual family conference is the most anticipated event for PSC members!

When you register for the 2018 conference, you gain access to unsurpassed networking opportunities with families affected by all areas of PHACE Syndrome from across the nation.

 

Your $200 registration for a family of four includes:
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  • Access to the world's leading PHACE physicians
  • Conference materials
  • Networking with PHACE families
  • Two breakfasts
  • Three lunches including Sunday picnic
  • Fabulous dinner at the Georgia Aquarium
  • Family Fun Day and picnic 
  • Children's programming during conference sessions

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Please fill out the form below and submit payment to secure your spots at the 2018 PHACE Syndrome Family conference. The Early Bird registration price is $200 for up to four family members; additional family members are $25 a person.

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The conference will be held at the DoubleTree Hilton in downtown Atlanta. We have reserved a block of rooms at a discounted rate for families to stay, making it convenient to attend all conference activities. Please click here to reserve your hotel room now. 

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A childcare room will be set up at the conference for children up to the age of 12, offering fun games and activities with youth and adult volunteers.  All children are welcome. We kindly request parents who choose to bring infants or toddlers into the conference session rooms to be conscious of everyone's ability to hear conference content.  Please be prepared to promptly take your little one for a stroll outside the room, should the need arise. More information regarding childcare will become available as conference nears. Please feel free to contact PSC with any immediate questions regarding your registration.

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2018 Conference Program

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FRIDAY JUNE 29, 2018

 

Welcome and Opening Remarks

Janet Ziffer

 

Keynote

Dr. Leslie Gordon and Dr. Scott Berns

 

History of PHACE Syndrome

Dr. Beth Drolet

 

The PHACE Syndrome Community: Mission, Vision, Values and our Common Journey

Jerri Lauffer

 

BREAK

 

Diagnostic Guidelines for PHACE Syndrome

Dr. Maria Garzon

 

The PHACE Registry: Update and Review of Accomplishments

Dr. Dawn Siegel

 

Hemangioma Treatment Panel

Dr. Denise Adams and Dr. Elena Pope

 

Family Luncheon

 

“Routine” Neuroimaging, Headaches, Aspirin Therapy, and Risk of Stroke in PHACE

Dr. Geoffrey Heyer

 

Cerebrovascular anomalies in PHACE, Angiograms, and Role of Neurointerventional Radiology and Neurosurgery

Dr. Darren Orbach

 

BREAK

 

Preparing your child for sedated vs unsedated neuroimaging and role of child life

Dr. Matt Hawkins and Emily Ammons

 

Neuroimaging Panel Q and A

Dr. Geoffrey Heyer, Dr. Darren Orbach, Dr. Matt Hawkins

 

Roundtable Discussions: All speakers

 

Wrap up and Adjourn for the day

 

Dinner and Tour: Georgia Aquarium

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SATURDAY JUNE 30, 2018

 

Team Care for PHACE and MAB Research Update

Dr. Beth Drolet, Dr. Maria Garzon

 

PHACE Registry and Kids First – Future Directions

Dr. Dawn Siegel

 

PHACE Syndrome Community: Future Directions and Call to Action

Jerri Lauffer

 

BREAK

 

Explaining PHACE to family, friends, and your community

Dr. Leslie Lawley

 

Taking care of yourself: Strategies to reduce stress and promote resilience

Stephanie Feely and Allison Pellettieri

 

 

Family Luncheon

 

Motor delays in children with PHACE and the role of physical therapy

Ellie Hoover and Sonika Tataria

 

Speech-language and feeding disorders in children with PHACE and role of the SLP

Dr. Adriane Baylis

 

Patient/Parent panel (TBD)

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BREAK

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Roundtable discussions: All speakers

 

Final Remarks

Janet Ziffer and Jerri Lauffer

 

Adjourn

 

SUNDAY, JULY 1, 2018

 

Family Fun Day, Centennial Olympic Park

Notes along the side of the form are meant to help with FAQs. 

Note: The Basic Family Package ($200) is the minimum option, even if only one adult attends. See above for all that is included in your registration fee.

If you have only one child attending the conference, please proceed to the question on food allergies. If you have more than one child attending, please provide the additional information requested.

Thank You to our

2018 Sponsors

GOLD:

SILVER: 

BRONZE: 

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Family Sponsorships Available:

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Platinum - $750

Gold - $500

Silver - $250

Thank you to all our supporters!

Maria C. Garzon, MD

Co-Director, Vascular Anomalies Group

Columbia University Medical Center, NY

NY-Presbyterian,

Morgan Stanley Children's Hospital

Food Allergy Section

If you would like to help other families attend the conference or help support PSC's mission to put on the conference, you can add a donation to your registration.

* denotes a required field

Want to wear PHACE shirts while at the conference or other events? 

Click here to order apparel for you and your family!

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