Just diagnosed with Paroxysmal nocturnal hemoglobinuria?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Paroxysmal nocturnal hemoglobinuria, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Paroxysmal nocturnal hemoglobinuria hub →Overview
Paroxysmal nocturnal hemoglobinuria is a rare condition. Also known as Marchiafava-Micheli disease, PNH. Tomeko brings together the specialists, research, clinical trials, treatments and community for Paroxysmal nocturnal hemoglobinuria so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:447 · OMIM 300818, 615399 · ICD-10 D59.5 · GARD 0007337
Find care for Paroxysmal nocturnal hemoglobinuria
Patient organizations for Paroxysmal nocturnal hemoglobinuria
- Aplastic Anemia & MDS International Foundation
Authoritative references for Paroxysmal nocturnal hemoglobinuria
Research & market landscape for Paroxysmal nocturnal hemoglobinuria
Following Paroxysmal nocturnal hemoglobinuria for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Paroxysmal nocturnal hemoglobinuria — the real-world landscape behind the condition, in one place.
- Latest Paroxysmal nocturnal hemoglobinuria research on PubMed ↗
- Recruiting Paroxysmal nocturnal hemoglobinuria trials on ClinicalTrials.gov ↗
- Explore the Paroxysmal nocturnal hemoglobinuria 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 Paroxysmal nocturnal hemoglobinuria and every rare condition. See how Tomeko works with industry →
Common questions
What is Paroxysmal nocturnal hemoglobinuria?
Paroxysmal nocturnal hemoglobinuria is a rare condition. Also known as Marchiafava-Micheli disease, PNH. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Paroxysmal nocturnal hemoglobinuria together in one place.
What are the symptoms of Paroxysmal nocturnal hemoglobinuria?
Symptoms of Paroxysmal nocturnal hemoglobinuria 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 Paroxysmal nocturnal hemoglobinuria.
How is Paroxysmal nocturnal hemoglobinuria treated?
Treatment for Paroxysmal nocturnal hemoglobinuria depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Paroxysmal nocturnal hemoglobinuria, and review current options with them.
What causes Paroxysmal nocturnal hemoglobinuria — is it genetic?
The cause and inheritance of Paroxysmal nocturnal hemoglobinuria are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Paroxysmal nocturnal hemoglobinuria can explain what it means for you and your family.
I was just diagnosed with Paroxysmal nocturnal hemoglobinuria — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Paroxysmal nocturnal hemoglobinuria, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Paroxysmal nocturnal hemoglobinuria?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Paroxysmal nocturnal hemoglobinuria, filtered to your area.
Are there clinical trials for Paroxysmal nocturnal hemoglobinuria?
Tomeko shows live, recruiting studies for Paroxysmal nocturnal hemoglobinuria from ClinicalTrials.gov on the hub.
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