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About Phace Syndrome Awareness Week 

Worldwide
EVENT NAME:
Phace Syndrome Awareness Week
EVENT CATEGORIES:
Lifestyle , Health
Family & Friends , Children
Dates Active:
Begins: Mar 17, 2024
Ends: Mar 24, 2024
EVENT ADDRESS:

DESCRIPTION:

International Phace Syndrome Awareness Week raises awareness about Phace Syndrome and supports families affected by the condition.

Phace Syndrome is a rare disease that affects multiple body systems and is characterized by several abnormalities that co-occur more frequently than expected. The acronym PHACE stands for Posterior fossa anomalies, Hemangioma, Arterial anomalies, Cardiac anomalies, and Eye anomalies. These represent the disorder's most common signs and symptoms. The syndrome is more prevalent in girls than in boys, and the severity and specific symptoms can vary significantly among affected individuals.

Most children with PHACE Syndrome do not exhibit all the major symptoms associated with the disorder. The most conspicuous sign of Phace Syndrome is often a hemangioma, an overgrowth of blood vessels, which typically appears on the face, head, or neck. The exact cause of Phace Syndrome is currently unknown.

The treatment for Phace Syndrome varies based on the specific symptoms and their severity. It often involves a multidisciplinary approach, including specialists in dermatology, cardiology, neurology, and ophthalmology. Treatment may include medications, surgery, or other interventions to manage the symptoms.

The Phace Syndrome Community and The Phaces Foundation of Canada established the awareness week to create awareness about the syndrome. It includes various activities such as webinars, research on the disease, and viewing educational videos to increase understanding of what Phace Syndrome is and how to improve the health and quality of life of those affected.

VIDEOS

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SUPPORTING DOCUMENTS

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ADDITIONAL IMAGES

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EVENT CHAMPION

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LAST UPDATED:

Jan 23, 2024

EVENT MANAGER:

LEEP
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