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SHOW YOUR PHACE!

Email us three photos to add you or your child to our Show Your PHACE campaign during

PHACE Syndrome Awareness Week.

All featured individuals have PHACE Syndrome.

Note about photos in the upper montage...many of those pictures were taken by  Positive Exposure Founder Rick Guidotti.  Click here for a photo gallery of his images from our 2014 conference.

Click on any one of the awareness posters below to see a larger view of these beautiful PHACES! 

Show More

Three Ways to Help

 

1. DONATE
    We're purely comprised of volunteers, and ALL
    donations go directly to helping our cause.

2. JOIN

     Become a member and join the PHACE Syndrome

     Community.

3. REGISTER
     If you or your child has PHACE Syndrome, we can't stress
     enough the importance of joining the registry. Note: you
     do NOT have to give DNA samples if you don't wish.

Thank you!

Fresh PHACE Facts:

  • 30-35% of those with PHACE will have malformations of the brain(structural brain abnormalities) — mainly of the back of the brain called the  posterior fossa, or the space at the base of the skull containing the brainstem and cerebellum.

  • It is not uncommon to have infantile hemangioma of the brain in PHACE approximately 15-18% of those with PHACE will have intracranial hemangioma.  

  • Developmental anomalies of the pituitary gland occur in 15-18% of those with PHACE syndrome. This could lead to growth or endocrine problems.

  • 80-90% of PHACE patients have Arterial Anomalies. This is the most variable and complicated abnormality in PHACE. Each child seems to have their own unique changes in the arteries of the chest, neck and brain. These abnormalities are believed to be the cause of migraine-like headaches.

  • Complications from severe  infantile hemangiomas in PHACE are becoming increasingly less common due to treatment with oral beta blockers. Long term affects can include scarring, impaired vision and damage to hearing.

  • 30% of PHACE patients have the Cardiovascular anomalies which can include coarctation of the aortic arch, aortic arch anomalies and subclavian artery anomalies.

  • 12-15% of PHACE patients have developmental abnormalities of the Eye. Most of the time they occur in the posterior segment of the eye.  

Click below to watch

Dr Dawn Siegel's informative webinar:

Investigations into the causes of PHACE Syndrome

Click below to watch

Dr. Beth Drolet's informative webinar:

The outcome of PHACE Syndrome

Click below to be directed to an amazing video produced by Positive Exposure sharing the stories of three families affected by PHACE:

March 22-29, 2015 marked the first PHACE Syndrome Awareness week. More than 90 families from around the world contributed photos, helping to raise more awarenes of PHACE Syndrome in a single week than ever before! Click here to see the 'patchwork' of our collective efforts, along with other facts about PHACE.

Call Us: 1 (678) 744-3971​   |   info@phacesyndromecommunity.org   |   3213 West Main Street #179 Rapid City, SD 57702, USA
 

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