Just diagnosed with PHACE syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees PHACE syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive PHACE syndrome hub →Overview
PHACE syndrome is a rare condition. Also known as PHACES syndrome, Pascual-Castroviejo syndrome type 2. Tomeko brings together the specialists, research, clinical trials, treatments and community for PHACE syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:42775 · OMIM 606519 · ICD-10 Q28.8 · GARD 0008338
Find care for PHACE syndrome
Authoritative references for PHACE syndrome
Research & market landscape for PHACE syndrome
Following PHACE syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for PHACE syndrome — the real-world landscape behind the condition, in one place.
- Latest PHACE syndrome research on PubMed ↗
- Recruiting PHACE syndrome trials on ClinicalTrials.gov ↗
- Explore the PHACE syndrome research & specialist footprint on Tomeko
Researchers, patient organizations & industry: Tomeko provides de-identified, no-PHI demand and engagement signal, trial awareness, and a labeled, editorially-firewalled presence for PHACE syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is PHACE syndrome?
PHACE syndrome is a rare condition. Also known as PHACES syndrome, Pascual-Castroviejo syndrome type 2. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for PHACE syndrome together in one place.
What are the symptoms of PHACE syndrome?
Symptoms of PHACE syndrome vary from person to person. For a reviewed, plain-language overview see the authoritative references below (NIH GARD, Orphanet), and discuss your own symptoms with a clinician who treats PHACE syndrome.
How is PHACE syndrome treated?
Treatment for PHACE syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see PHACE syndrome, and review current options with them.
What causes PHACE syndrome — is it genetic?
The cause and inheritance of PHACE syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats PHACE syndrome can explain what it means for you and your family.
I was just diagnosed with PHACE syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees PHACE syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for PHACE syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat PHACE syndrome, filtered to your area.
Are there clinical trials for PHACE syndrome?
Tomeko shows live, recruiting studies for PHACE syndrome from ClinicalTrials.gov on the hub.
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