International Phace Syndrome Awareness Week
PHACE Syndrome Awareness Week brings attention to a rare condition that often starts with a bright red birthmark on a child’s face.
This mark can signal deeper medical problems involving the brain, heart, eyes, or arteries.
Parents usually notice the birthmark first, but doctors soon find more going on. That moment can feel like a storm. Questions rush in, answers take time.
During this week, families find comfort in shared stories. They discover others who’ve walked this road and feel seen for the first time.
Awareness grows when people understand what’s behind that red mark. PHACE Syndrome Awareness Week helps friends, neighbors, and teachers grasp the full picture. It also fuels teamwork among specialists looking for better care.
Each story shared brings more clarity and compassion. As knowledge spreads, children and their families get stronger support.
That’s what this week creates—connection, insight, and real help where it’s needed most.
How to Observe PHACE Syndrome Awareness Week
Here are some thoughtful and creative ways to mark International PHACE Syndrome Awareness Week:
Host a Community Education Session
Gather families, teachers, or neighbors for a simple talk about PHACE syndrome. Share clear facts about the birthmark and its possible health impacts in an easy format.
Invite a specialist or trained volunteer to answer questions. This sparks understanding and empathy based on reliable information.
Share Personal Stories Online
Post a photo or video with a brief note from someone living with PHACE. Use friendly language to describe what it’s like to see the birthmark and go through scans or treatments.
Social media stories do two things: they inform others and unite those on the same path.
Join a Virtual or Local Group
Tune in to Zoom meetups or join an online discussion hosted by PHACE support groups. These gatherings help families connect, ask questions, and feel heard. Professionals often join to discuss the latest care steps.
Create a Fundraiser or Donate
Set up a small fundraiser like a walkathon, bake sale, or social media campaign to support PHACE research registries.
Local or online donations help fund studies and ensure families get accurate tests and care.
Display Awareness Materials Publicly
Place posters or desk cards in public spaces—clinics, libraries, community centers. Use visuals that explain PHACE simply and include a link or QR code to support groups or info sites.
This helps catch attention and prompt inquiry.
Wear Support Colors or Symbols
Wear distinctive ribbons or accessories (like zebra-pattern prints) to signal backing for rare disease causes.
This choice often starts conversations and opens doors for explaining PHACE details.
Light Up for PHACE
Work with community spaces to light buildings or landmarks in a special color that represents PHACE awareness.
Similar efforts for rare disease awareness have helped draw attention and encourage local coverage.
History of International Phace Syndrome Awareness Week
PHACE Syndrome Awareness Week began in 2015, thanks to the work of dedicated parents, advocates, and two key organizations—the PHACE Syndrome Community in the United States and the PHACES Foundation of Canada.
Their goal was simple: help people understand a rare condition that affects children in many ways.
Before the week existed, many families felt isolated and confused. Doctors knew about PHACE syndrome, but most people hadn’t heard of it.
That changed when over 90 families shared photos, stories, and facts during the first awareness week. Their effort gave faces to the condition and offered hope to others going through the same thing.
The name “PHACE” was first used in 1996 by Dr. Ilona Frieden and her team. They connected facial birthmarks in infants to deeper problems in the brain, heart, and eyes.
This discovery helped doctors diagnose the condition earlier and more accurately.
Years later, families who lived with PHACE took that medical knowledge and turned it into something powerful: a week of action, awareness, and connection. Today, the week includes online events, story-sharing, expert talks, and fundraising.
It helps people learn, support each other, and push for better care. What began as a few voices has grown into a movement that keeps gaining strength.
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