You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Hepatoerythropoietic porphyria, look for clinical trials, and connect with others living with it — all in one place.
Open the full Hepatoerythropoietic porphyria hub →Hepatoerythropoietic porphyria is a rare condition. Also known as HEP. Tomeko brings together the specialists, research, clinical trials, treatments and community for Hepatoerythropoietic porphyria so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:95159 · OMIM 176100 · ICD-10 E80.2 · GARD 0006169
Start by learning the basics from an authoritative source, find a specialist or center that sees Hepatoerythropoietic porphyria, and connect with a patient organization. Tomeko brings these together on one hub.
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Hepatoerythropoietic porphyria, filtered to your area.
Tomeko shows live, recruiting studies for Hepatoerythropoietic porphyria from ClinicalTrials.gov on the hub.