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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Patient Advocacy Fellowship
Congratulations
Dr. Jacqueline Tran Cooper
My name is Jacqueline Tran Cooper and I am originally from California. A former “banana slug” from the University of California Santa Cruz! I spent my internship working at the Children’s Hospital of Wisconsin in Milwaukee and am now fine tuning my skills as a dermatology resident at the University of Wisconsin Madison.
Having worked with experts in pediatric dermatology over the past year, as well as during several rotations as a medical student, I have witnessed the profound impact pediatric dermatologists have on their patients. From treating scarring acne that contributes to anxiety and depression in adolescents to managing complex multisystem conditions such as PHACE syndrome, the breadth and depth of this specialty are what I hope to master.
My goal is to become a pediatric dermatologist, and I know the PHACE Syndrome Community Fellowship will strengthen my ability to recognize the nuances of this condition, deepen my compassion and empathy for patients and their families beyond the clinic walls, and empower me to advocate for them in a more meaningful way.
I look forward to meeting more PHACE and LUMBAR syndrome families, and connecting in a meaningful way.
Congratulations
Dr. Ashley Ng
My name is Ashley Ng, and I grew up in the suburbs of Milwaukee, Wisconsin. My medical school training was at the Medical College of Wisconsin, which is where I am currently doing my dermatology residency. I previously completed a research fellowship at the University of Wisconsin-Madison focused on vascular anomalies, introducing me to this incredible field.
The opportunity to partner with the PHACE Syndrome Community (PSC) through the Advocacy Fellowship and to learn from patients, families, and national leaders is one that strongly aligns with my professional goals as an aspiring pediatric dermatologist. It is a privilege to not only support families through challenging and uncertain times, but also to celebrate their growth and resilience. Through the PSC Advocacy Fellowship, I am eager to partner with other clinicians, families, and nonprofit organizations to drive meaningful change and amplify the voices of patients and families.
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I am excited to serve as one of the PSC Advocacy Fellows this year!
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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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. 
Resources for you and your patients.
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