Just diagnosed with Kousseff syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Kousseff syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Kousseff syndrome hub →Overview
Kousseff syndrome is a rare condition. Also known as Sacral meningocele-conotruncal heart defects syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Kousseff syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:2351 · ICD-10 Q87.8 · GARD 0004752
Find care for Kousseff syndrome
Authoritative references for Kousseff syndrome
Research & market landscape for Kousseff syndrome
Following Kousseff syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Kousseff syndrome — the real-world landscape behind the condition, in one place.
- Latest Kousseff syndrome research on PubMed ↗
- Recruiting Kousseff syndrome trials on ClinicalTrials.gov ↗
- Explore the Kousseff 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 Kousseff syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Kousseff syndrome?
Kousseff syndrome is a rare condition. Also known as Sacral meningocele-conotruncal heart defects syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Kousseff syndrome together in one place.
What are the symptoms of Kousseff syndrome?
Symptoms of Kousseff 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 Kousseff syndrome.
How is Kousseff syndrome treated?
Treatment for Kousseff syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Kousseff syndrome, and review current options with them.
What causes Kousseff syndrome — is it genetic?
The cause and inheritance of Kousseff syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Kousseff syndrome can explain what it means for you and your family.
I was just diagnosed with Kousseff syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Kousseff syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Kousseff syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Kousseff syndrome, filtered to your area.
Are there clinical trials for Kousseff syndrome?
Tomeko shows live, recruiting studies for Kousseff syndrome from ClinicalTrials.gov on the hub.
Related conditions
Other conditions on Tomeko you may be looking for: