Just diagnosed with Proteus syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Proteus syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Proteus syndrome hub →Overview
Proteus syndrome is a rare condition. Also known as Partial gigantism-nevi-hemihypertrophy-macrocephaly syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Proteus syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:744 · OMIM 176920 · ICD-10 Q87.3 · GARD 0007475
Find care for Proteus syndrome
Authoritative references for Proteus syndrome
Research & market landscape for Proteus syndrome
Following Proteus syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Proteus syndrome — the real-world landscape behind the condition, in one place.
- Latest Proteus syndrome research on PubMed ↗
- Recruiting Proteus syndrome trials on ClinicalTrials.gov ↗
- Explore the Proteus 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 Proteus syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Proteus syndrome?
Proteus syndrome is a rare condition. Also known as Partial gigantism-nevi-hemihypertrophy-macrocephaly syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Proteus syndrome together in one place.
What are the symptoms of Proteus syndrome?
Symptoms of Proteus 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 Proteus syndrome.
How is Proteus syndrome treated?
Treatment for Proteus syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Proteus syndrome, and review current options with them.
What causes Proteus syndrome — is it genetic?
The cause and inheritance of Proteus syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Proteus syndrome can explain what it means for you and your family.
I was just diagnosed with Proteus syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Proteus syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Proteus syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Proteus syndrome, filtered to your area.
Are there clinical trials for Proteus syndrome?
Tomeko shows live, recruiting studies for Proteus syndrome from ClinicalTrials.gov on the hub.
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