Welcome to the PHACE Syndrome Community page for professionals. The information on this page is geared towards all professionals treating PHACE and LUMBAR syndrome patients, or have an interest in PHACE and LUMBAR Syndrome.
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VAccess.org is a free, clinician-focused resource designed to support all clinicians caring for patients with rare or complicated vascular and lymphatic anomalies (or seeking evaluation for vascular and lymphatic anomalies). In addition to helpful educational documents and patient support resources, clinicians can submit an “Ask a Specialist” request to get guidance on real-world clinical questions and use the “Find a VAC” tool to find a multidisciplinary vascular anomalies clinic in their area. Check out VAccess.org today and share it within your clinical networks. 
The Stanford Hemangioma Registry's goal is to investigate the underlying genetics and determine risk factors for complications in hemangiomas and the related conditions PHACE and LUMBAR. We hope to develop pharmacologic treatments for these conditions with our work.
The registry is for people diagnosed with PHACE, LUMBAR and other, hemangioma-related syndromes, and performs a genetic analysis. Please note: patients do NOT have to provide DNA samples to join the registry. The researchers may ask, but the patient may decline. Every piece of information helps the research team learn more about PHACE.
The PHACE registry goals are to:
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Develop tools to predict the risk of worsening blood vessel changes in the brain with the goal to find treatments to prevent complications in the future
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Understand what genes or environmental factors cause the developmental heart, brain and blood vessel changes in PHACE
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Learn more about the Stanford Hemangioma Registry
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Resources for you and your patients.
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