Just diagnosed with Tempi syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Tempi syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Tempi syndrome hub →Overview
Tempi syndrome is a rare condition. Also known as Telangiectasia-erythrocytosis-monoclonal gammopathy-perinephric-fluid collections-intrapulmonary shunting syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Tempi syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:284227 · ICD-10 D47.2 · GARD 0010962
Find care for Tempi syndrome
Authoritative references for Tempi syndrome
Research & market landscape for Tempi syndrome
Following Tempi syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Tempi syndrome — the real-world landscape behind the condition, in one place.
- Latest Tempi syndrome research on PubMed ↗
- Recruiting Tempi syndrome trials on ClinicalTrials.gov ↗
- Explore the Tempi 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 Tempi syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Tempi syndrome?
Tempi syndrome is a rare condition. Also known as Telangiectasia-erythrocytosis-monoclonal gammopathy-perinephric-fluid collections-intrapulmonary shunting syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Tempi syndrome together in one place.
What are the symptoms of Tempi syndrome?
Symptoms of Tempi 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 Tempi syndrome.
How is Tempi syndrome treated?
Treatment for Tempi syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Tempi syndrome, and review current options with them.
What causes Tempi syndrome — is it genetic?
The cause and inheritance of Tempi syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Tempi syndrome can explain what it means for you and your family.
I was just diagnosed with Tempi syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Tempi syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Tempi syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Tempi syndrome, filtered to your area.
Are there clinical trials for Tempi syndrome?
Tomeko shows live, recruiting studies for Tempi syndrome from ClinicalTrials.gov on the hub.
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