Just diagnosed with POEMS syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees POEMS syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive POEMS syndrome hub →Overview
POEMS syndrome is a rare condition. Also known as Crow-Fukase syndrome, Osteosclerotic myeloma, PEP syndrome, Polyneuropathy-endocrinopathy-plasma cell dyscrasia syndrome, Takatsuki syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for POEMS syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:2905 · ICD-10 D47.2 · GARD 0007411
Find care for POEMS syndrome
Authoritative references for POEMS syndrome
Research & market landscape for POEMS syndrome
Following POEMS syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for POEMS syndrome — the real-world landscape behind the condition, in one place.
- Latest POEMS syndrome research on PubMed ↗
- Recruiting POEMS syndrome trials on ClinicalTrials.gov ↗
- Explore the POEMS 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 POEMS syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is POEMS syndrome?
POEMS syndrome is a rare condition. Also known as Crow-Fukase syndrome, Osteosclerotic myeloma, PEP syndrome, Polyneuropathy-endocrinopathy-plasma cell dyscrasia syndrome, Takatsuki syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for POEMS syndrome together in one place.
What are the symptoms of POEMS syndrome?
Symptoms of POEMS 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 POEMS syndrome.
How is POEMS syndrome treated?
Treatment for POEMS syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see POEMS syndrome, and review current options with them.
What causes POEMS syndrome — is it genetic?
The cause and inheritance of POEMS syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats POEMS syndrome can explain what it means for you and your family.
I was just diagnosed with POEMS syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees POEMS syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for POEMS syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat POEMS syndrome, filtered to your area.
Are there clinical trials for POEMS syndrome?
Tomeko shows live, recruiting studies for POEMS syndrome from ClinicalTrials.gov on the hub.
Related conditions
Other conditions on Tomeko you may be looking for: