Just diagnosed with Ectopia cordis?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Ectopia cordis, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Ectopia cordis hub →Overview
Ectopia cordis is a rare condition. Also known as Extrathoracic heart. Tomeko brings together the specialists, research, clinical trials, treatments and community for Ectopia cordis so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:448270 · ICD-10 Q24.8 · GARD 0021877
Find care for Ectopia cordis
Authoritative references for Ectopia cordis
Research & market landscape for Ectopia cordis
Following Ectopia cordis for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Ectopia cordis — the real-world landscape behind the condition, in one place.
- Latest Ectopia cordis research on PubMed ↗
- Recruiting Ectopia cordis trials on ClinicalTrials.gov ↗
- Explore the Ectopia cordis 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 Ectopia cordis and every rare condition. See how Tomeko works with industry →
Common questions
What is Ectopia cordis?
Ectopia cordis is a rare condition. Also known as Extrathoracic heart. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Ectopia cordis together in one place.
What are the symptoms of Ectopia cordis?
Symptoms of Ectopia cordis 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 Ectopia cordis.
How is Ectopia cordis treated?
Treatment for Ectopia cordis depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Ectopia cordis, and review current options with them.
What causes Ectopia cordis — is it genetic?
The cause and inheritance of Ectopia cordis are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Ectopia cordis can explain what it means for you and your family.
I was just diagnosed with Ectopia cordis — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Ectopia cordis, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Ectopia cordis?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Ectopia cordis, filtered to your area.
Are there clinical trials for Ectopia cordis?
Tomeko shows live, recruiting studies for Ectopia cordis from ClinicalTrials.gov on the hub.
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