Just diagnosed with Marfan syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Marfan syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Marfan syndrome hub →Overview
Marfan syndrome is a rare condition. Also known as MFS. Tomeko brings together the specialists, research, clinical trials, treatments and community for Marfan syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:558 · OMIM 154700, 610168 · ICD-10 Q87.4 · GARD 0016535
Find care for Marfan syndrome
Authoritative references for Marfan syndrome
Research & market landscape for Marfan syndrome
Following Marfan syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Marfan syndrome — the real-world landscape behind the condition, in one place.
- Latest Marfan syndrome research on PubMed ↗
- Recruiting Marfan syndrome trials on ClinicalTrials.gov ↗
- Explore the Marfan 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 Marfan syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Marfan syndrome?
Marfan syndrome is a rare condition. Also known as MFS. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Marfan syndrome together in one place.
What are the symptoms of Marfan syndrome?
Symptoms of Marfan 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 Marfan syndrome.
How is Marfan syndrome treated?
Treatment for Marfan syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Marfan syndrome, and review current options with them.
What causes Marfan syndrome — is it genetic?
The cause and inheritance of Marfan syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Marfan syndrome can explain what it means for you and your family.
I was just diagnosed with Marfan syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Marfan syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Marfan syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Marfan syndrome, filtered to your area.
Are there clinical trials for Marfan syndrome?
Tomeko shows live, recruiting studies for Marfan syndrome from ClinicalTrials.gov on the hub.
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