Just diagnosed with Beckwith-Wiedemann syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Beckwith-Wiedemann syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Beckwith-Wiedemann syndrome hub →Overview
Beckwith-Wiedemann syndrome is a rare condition. Also known as BWS, Exomphalos-macroglossia-gigantism syndrome, Wiedemann-Beckwith syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Beckwith-Wiedemann syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:116 · OMIM 130650 · ICD-10 Q87.3 · GARD 0003343
Find care for Beckwith-Wiedemann syndrome
Patient organizations for Beckwith-Wiedemann syndrome
- Beckwith-Wiedemann Children's Foundation International
Authoritative references for Beckwith-Wiedemann syndrome
Research & market landscape for Beckwith-Wiedemann syndrome
Following Beckwith-Wiedemann syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Beckwith-Wiedemann syndrome — the real-world landscape behind the condition, in one place.
- Latest Beckwith-Wiedemann syndrome research on PubMed ↗
- Recruiting Beckwith-Wiedemann syndrome trials on ClinicalTrials.gov ↗
- Explore the Beckwith-Wiedemann 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 Beckwith-Wiedemann syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Beckwith-Wiedemann syndrome?
Beckwith-Wiedemann syndrome is a rare condition. Also known as BWS, Exomphalos-macroglossia-gigantism syndrome, Wiedemann-Beckwith syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Beckwith-Wiedemann syndrome together in one place.
What are the symptoms of Beckwith-Wiedemann syndrome?
Symptoms of Beckwith-Wiedemann 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 Beckwith-Wiedemann syndrome.
How is Beckwith-Wiedemann syndrome treated?
Treatment for Beckwith-Wiedemann syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Beckwith-Wiedemann syndrome, and review current options with them.
What causes Beckwith-Wiedemann syndrome — is it genetic?
The cause and inheritance of Beckwith-Wiedemann syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Beckwith-Wiedemann syndrome can explain what it means for you and your family.
I was just diagnosed with Beckwith-Wiedemann syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Beckwith-Wiedemann syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Beckwith-Wiedemann syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Beckwith-Wiedemann syndrome, filtered to your area.
Are there clinical trials for Beckwith-Wiedemann syndrome?
Tomeko shows live, recruiting studies for Beckwith-Wiedemann syndrome from ClinicalTrials.gov on the hub.
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