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Capillary leak syndrome

Specialists and centers, recruiting clinical trials, patient organizations, research, and community for Capillary leak syndrome — brought together in one place.

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Just diagnosed with Capillary leak syndrome?

You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Capillary leak syndrome, look for clinical trials, and connect with others living with it — all in one place.

Open the full interactive Capillary leak syndrome hub →

Overview

Capillary leak syndrome is a rare condition. Also known as Capillary hyperpermeability syndrome, Capillary leak syndrome, Clarkson disease, Idiopathic capillary leak syndrome, SCLS. Tomeko brings together the specialists, research, clinical trials, treatments and community for Capillary leak syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.

Identifiers: ORPHA:188 · ICD-10 I78.8 · GARD 0001084

Find care for Capillary leak syndrome

Authoritative references for Capillary leak syndrome

Research & market landscape for Capillary leak syndrome

Following Capillary leak syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Capillary leak syndrome — the real-world landscape behind the condition, in one place.

Researchers, patient organizations & industry: Tomeko provides de-identified, no-PHI demand and engagement signal, trial awareness, and a labeled, editorially-firewalled presence for Capillary leak syndrome and every rare condition. See how Tomeko works with industry →

Common questions

What is Capillary leak syndrome?

Capillary leak syndrome is a rare condition. Also known as Capillary hyperpermeability syndrome, Capillary leak syndrome, Clarkson disease, Idiopathic capillary leak syndrome, SCLS. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Capillary leak syndrome together in one place.

What are the symptoms of Capillary leak syndrome?

Symptoms of Capillary leak 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 Capillary leak syndrome.

How is Capillary leak syndrome treated?

Treatment for Capillary leak syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Capillary leak syndrome, and review current options with them.

What causes Capillary leak syndrome — is it genetic?

The cause and inheritance of Capillary leak syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Capillary leak syndrome can explain what it means for you and your family.

I was just diagnosed with Capillary leak syndrome — what should I do first?

Start by learning the basics from an authoritative source, find a specialist or center that sees Capillary leak syndrome, and connect with a patient organization. Tomeko brings these together on one hub.

Where can I find a specialist for Capillary leak syndrome?

Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Capillary leak syndrome, filtered to your area.

Are there clinical trials for Capillary leak syndrome?

Tomeko shows live, recruiting studies for Capillary leak syndrome from ClinicalTrials.gov on the hub.

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