CONFERENCE
Children at the PHACE Syndrome conference held in the summer of 2016.
2018 Conference News:
Thank you to all that joined us - physically or in spirit - at the 2018 PHACE family conference in downtown Atlanta.
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2018 Conference Presentations:
Here are PDFs of the authorized presentations from our speakers.
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The PHACE Registry: Update and Review of Accomplishments (Dr. Siegel)
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“Routine” Neuroimaging, Headaches, Aspirin Therapy, and Risk of Stroke in PHACE (Dr. Heyer)
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Cerebrovascular anomalies in PHACE, Angiograms, and Role of Neurointerventional Radiology and Neurosurgery (Dr. Orbach)
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Speech and Language disorders in Children with PHACE (Dr. Baylis)
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Therapy Considerations in Children with PHACE Syndrome (Dr. Hoover and Dr. Tataria)
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Resilience and Self-Care for Parents of Medically Complex Children
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Explaining PHACE to Family, Friends and Your Community (Dr. Lawley)
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Preparing your child for sedated vs unsedated neuroimaging and role of child life (Dr. Hawkins and Emily Ammons)
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Neuroimaging Panel Q and A (Dr. Heyer, Dr. Orbach, Dr. Hawkins)
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Maria C. Garzon, MD
Co-Director, Vascular Anomalies Group
Columbia University Medical Center, NY
NY-Presbyterian,
Morgan Stanley Children's Hospital
2016 Conference Presentations:
Here are PDFs of the authorized presentations from our speakers.
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Stay tuned for more information and photos. We're getting everything turned around as quickly as we can!
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2014 Conference Presentations:
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PHACE Family Conference 2014 Agenda
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PHACE Family Conference 2014 Introduction Material
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PHACE Family Conference 2014 PSC Journey by Ziffers
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PHACE Family Conference 2014 Frieden
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PHACE Family Conference 2014 Siegel
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PHACE Family Conference 2014 Marcia
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PHACE Family Conference 2014 Drolet
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PHACE Family Conference 2014 Heyer
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PHACE Family Conference 2014 Orbach
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PHACE Family Conference 2014 PSC Strategy by Jill and Jen
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PHACE Family Conference 2014 Binder Pages
Thanks to all the doctors, families and PHACE Syndrome Community volunteers that worked to make our first conference a great success!
Photos from the 2014 Conference:
We were thrilled to experience a presentation and AMAZING photo session by Positive Exposure founder Rick Guidotti! Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.
So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure in 1998. Click here for a photo gallery of some of the images he took at our conference:
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