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Dr. Linda Rozell-Shannon, PhD President and Founder
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PHACE Syndrome


Here is an acronym that will help you to determine if in fact this is what the child or adult has:

P = Posterior Fossa (a tumor or vascular growth located in the rear of the brain and can often be misdiagnosed as a cyst).
H = Hemangioma or other vascular birthmark present either on the outside or inside.
A = Arterial defect in the head and or neck area - a missing or problematic artery.
C = Cardiac problems - these vary from minor to severe.
E = Eye problems - these also vary from minor to severe.

The key with PHACE syndrome is to see a physician who knows how to diagnose and how to treat the complete syndrome.

A team must be consulted which must include a neurologist, cardiologist, opthamologist and vascular birthmark specialist and/or surgeon. There are very few cases of this syndrome accurately diagnosed in this country but there is becoming more and more information. If you suspect your child has PHACE syndrome, consult with a vascular birthmark specialist in order to receive an evaluation and confirmation of the diagnosis.

 

The VBF Birthmark Fact Booklet is here (pdf)

 

New paper on PHACE Syndrome (pdf)

 

 

 

 

 

Vascular Birthmarks Foundation – PHACE Syndrome Experts

 

 

Francine Blei, MD, MBA
Lenox Hill Hospital -Manhattan Eye and Ear (MEETH) Location
210 East 64th Street – between 2nd and 3rd Avenues - Seventh Floor
New York, NY 10065
PHONE: 212-702-7795
FAX: 212-702-7779
http://avmcenterny.com/
fblei@nshs.edu

 

 

 


Dr. Ilona Frieden Director of Pediatric Dermatology at UCSF Children's Hospital
Birthmarks and Vascular Anomalies Center Appointments
1701 Divisadero Street, 3rd Floor
San Francisco, CA 94115
Therese Clemente, Clinical Coordinator
A pediatric dermatologist who treats all birthmarks with a special interest in vascular anomalies. Office includes a multidisciplinary vascular anomalies team: dermatology, plastics, interventional radiology, and ENT.
www.bvac.ucsf.edu

 

 

 

 

Beth A Drolet, M.D.
Associate Professor of Dermatology and Pediatrics
Medical College of Wisconsin.
Medical Director of Dermatology and Vascular Anomalies Clinic
Children's Hospital of Wisconsin
Office phone 414-805-5304
Appointments 414-607- 5280or 877-607-5280
Children's Hospital of Wisconsin
Birthmarks and Vascular Anomalies Center
9000 W Wisconsin Ave.
PO box 1997
Milwaukee, WI 53201

 

 

Dr. Denise Adam

Co-Director of Vascular Anomalies Center

Children's Hospital
Division of Plastic Surgery
300 Longwood Avenue
Boston, MA 02115
617-355-5226

 

For Family Support:

Facebook PHACE Syndrome Community Support Group

https://www.facebook.com/groups/phacesyndromecommunity/