Just diagnosed with Fountain syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Fountain syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Fountain syndrome hub →Overview
Fountain syndrome is a rare condition. Also known as Deafness-skeletal dysplasia-coarse face with full lips syndrome, Deafness-skeletal dysplasia-lip granuloma syndrome, Hearing loss-skeletal dysplasia-coarse face with full lips syndrome, Hearing loss-skeletal dysplasia-lip granuloma syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Fountain syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:3219 · OMIM 229120 · ICD-10 Q87.8 · GARD 0000064
Find care for Fountain syndrome
Patient organizations for Fountain syndrome
- American Speech-Language-Hearing Association
Authoritative references for Fountain syndrome
Research & market landscape for Fountain syndrome
Following Fountain syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Fountain syndrome — the real-world landscape behind the condition, in one place.
- Latest Fountain syndrome research on PubMed ↗
- Recruiting Fountain syndrome trials on ClinicalTrials.gov ↗
- Explore the Fountain 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 Fountain syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Fountain syndrome?
Fountain syndrome is a rare condition. Also known as Deafness-skeletal dysplasia-coarse face with full lips syndrome, Deafness-skeletal dysplasia-lip granuloma syndrome, Hearing loss-skeletal dysplasia-coarse face with full lips syndrome, Hearing loss-skeletal dysplasia-lip granuloma syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Fountain syndrome together in one place.
What are the symptoms of Fountain syndrome?
Symptoms of Fountain 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 Fountain syndrome.
How is Fountain syndrome treated?
Treatment for Fountain syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Fountain syndrome, and review current options with them.
What causes Fountain syndrome — is it genetic?
The cause and inheritance of Fountain syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Fountain syndrome can explain what it means for you and your family.
I was just diagnosed with Fountain syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Fountain syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Fountain syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Fountain syndrome, filtered to your area.
Are there clinical trials for Fountain syndrome?
Tomeko shows live, recruiting studies for Fountain syndrome from ClinicalTrials.gov on the hub.
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