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Cutaneous porphyria

Just diagnosed with Cutaneous porphyria?

You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Cutaneous porphyria, look for clinical trials, and connect with others living with it — all in one place.

Open the full Cutaneous porphyria hub →

Overview

Cutaneous porphyria is a rare condition. Also known as CEP, Günther disease. Tomeko brings together the specialists, research, clinical trials, treatments and community for Cutaneous porphyria so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.

Identifiers: ORPHA:79277 · OMIM 263700 · ICD-10 E80.0 · GARD 0004446

Find care for Cutaneous porphyria

Authoritative references for Cutaneous porphyria

Common questions

I was just diagnosed with Cutaneous porphyria — what should I do first?

Start by learning the basics from an authoritative source, find a specialist or center that sees Cutaneous porphyria, and connect with a patient organization. Tomeko brings these together on one hub.

Where can I find a specialist for Cutaneous porphyria?

Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Cutaneous porphyria, filtered to your area.

Are there clinical trials for Cutaneous porphyria?

Tomeko shows live, recruiting studies for Cutaneous porphyria from ClinicalTrials.gov on the hub.

Informational only — not medical advice. Always consult a qualified clinician. Provider and reference data from public sources (NIH GARD, Orphanet, OMIM, HPO, MONDO, ClinicalTrials.gov, CMS NPPES). © Tomeko · tomekohealth.com