Just diagnosed with Robinow syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Robinow syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Robinow syndrome hub →Overview
Robinow syndrome is a rare condition. Also known as Acral dysostosis with facial and genital abnormalities, Fetal face syndrome, Mesomelic dwarfism-small genitalia syndrome, Robinow dwarfism, Robinow-Silverman-Smith syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Robinow syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:97360 · OMIM 180700, 268310, 616331 · ICD-10 Q87.1 · GARD 0000312
Find care for Robinow syndrome
Authoritative references for Robinow syndrome
Research & market landscape for Robinow syndrome
Following Robinow syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Robinow syndrome — the real-world landscape behind the condition, in one place.
- Latest Robinow syndrome research on PubMed ↗
- Recruiting Robinow syndrome trials on ClinicalTrials.gov ↗
- Explore the Robinow 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 Robinow syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Robinow syndrome?
Robinow syndrome is a rare condition. Also known as Acral dysostosis with facial and genital abnormalities, Fetal face syndrome, Mesomelic dwarfism-small genitalia syndrome, Robinow dwarfism, Robinow-Silverman-Smith syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Robinow syndrome together in one place.
What are the symptoms of Robinow syndrome?
Symptoms of Robinow 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 Robinow syndrome.
How is Robinow syndrome treated?
Treatment for Robinow syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Robinow syndrome, and review current options with them.
What causes Robinow syndrome — is it genetic?
The cause and inheritance of Robinow syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Robinow syndrome can explain what it means for you and your family.
I was just diagnosed with Robinow syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Robinow syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Robinow syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Robinow syndrome, filtered to your area.
Are there clinical trials for Robinow syndrome?
Tomeko shows live, recruiting studies for Robinow syndrome from ClinicalTrials.gov on the hub.
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