Latest for Polycythemia Vera
See all trialsThe week in rare diseaseEach date is the day a change was posted. Open an item to see where things stand now.
- Who can joinWho can join changed for Study of Rusfertide in Adults With Polycythemia Vera (PV) (Phase 3, Protagonist Therapeutics)ClinicalTrials.gov
More about Polycythemia Vera
The high blood viscosity also increases risk of blood clots (thrombosis) and bleeding complications. About 95% of PV patients carry the JAK2 V617F mutation, and most of the rest have a different change in the same gene, in a region called exon 12.
Keep reading about Polycythemia Vera
These mutations cause uncontrolled cell growth independent of normal growth signal regulation. Patients often present with constitutional symptoms including fatigue, headaches, and visual disturbances. A characteristic symptom, aquagenic pruritus (itching triggered by water contact) occurs in about half of patients. Splenomegaly (enlarged spleen) occurs in 75% of patients. Long-term complications include risk of thrombotic events (stroke, heart attack, deep vein thrombosis) and potential transformation to myelofibrosis or acute leukemia.
What are the symptoms of Polycythemia Vera?
These are common symptoms of Polycythemia Vera, and how strong they are varies from person to person.
- Fatigue and weakness
- Headaches and dizziness
- Vision disturbances or blurred vision
- Itching, especially after bathing
- Burning sensations in the hands and feet
- Easy bruising or bleeding
Who gets Polycythemia Vera?
Polycythemia Vera typically affects older adults, with median age of diagnosis around 65 years, though it can occur at younger ages. It affects males and females approximately equally. The disease occurs across all racial and ethnic groups. Approximately 95% of PV patients carry the JAK2 V617F mutation, which can be detected through blood testing.
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Which medicines are FDA-approved for Polycythemia Vera?
There are currently 3 FDA-approved medications for Polycythemia Vera.
Source: openFDA drug labeling data. This list may not include all treatments. Always consult your doctor.
How to get help paying for Polycythemia Vera treatment
Charity funds and drugmaker programs for Polycythemia Vera, checked at the source.
- From a charity · Blood Cancer United (formerly The Leukemia & Lymphoma Society)Clinical Trials Co-Pay Fund (all blood cancers) fundOpen
Pays for: Insurance premiums and treatment-related copays, deductibles and coinsurance, up to $3,500 per year. Requires health insurance (any kind).
- From a charity · Blood Cancer United (formerly The Leukemia & Lymphoma Society)Patient Aid Program fundOpen
Pays for: One-time $100 stipend for non-medical expenses (transportation, food, housing, utilities); no income or insurance requirement, up to $100 per year.
The foundation says: “CURRENT FUND STATUS: Open. Fund is currently Open.” - From a charity · CancerCare Co-Payment Assistance FoundationMyeloproliferative Neoplasms fundOpen
Pays for: Copays, coinsurance and deductibles for treatment, up to $7,000 per year. Requires Medicare, Medicaid or TRICARE.
The foundation says: “Status: Open. Grant Amount: $7,000 (Initial Grant Amount $7,000; Program CAP Amount $10,000)” - From a charity · TotalAssist (formerly PAN Foundation)Myeloproliferative Neoplasms fundOpen
Pays for: Out-of-pocket costs for approved medications, up to $9,500 per year. Requires health insurance (any kind).
- From a charity · The Assistance FundMyeloproliferative Neoplasms (MPN) fundWaitlist
Pays for: Copays, coinsurance, deductibles and other health-related expenses.
- Mimrylo (Rusfertide) · MIMRYLO Patient Support (Takeda Oncology Here2Assist)
- Besremi (Ropeginterferon alfa-2b-njft) · PharmaEssentia SOURCE
- Jakafi (Ruxolitinib) · IncyteCARES
Every program and fund for Polycythemia Vera, by insurance →
Side effects people have reported to the FDA
Side effects people have reported to the FDA
Real-world side effect reports from the FDA Adverse Event Reporting System (FAERS). Includes both FDA-approved drugs and investigational therapies from active clinical trials. Click any drug to see what patients reported.
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Diagnosis and genetic testing
Genetic testing for Polycythemia Vera
Genetic testing can confirm a diagnosis, guide treatment decisions, and identify family members who may be at risk.
The JAK2 gene page lists every condition Orphanet links to the gene and the open trials that name it.
Finding labs...
Trusted Polycythemia Vera resources
Reputable organizations and medical references for learning more about Polycythemia Vera, including disease registries, foundation resources, and clinical guidelines.
- National Organization for Rare Disorders (NORD)
- Blood Cancer United (formerly The Leukemia & Lymphoma Society)
- NIH Genetic and Rare Diseases Information Center
- Mehta et al., Epidemiology of myeloproliferative neoplasms in the United States, Leukemia and Lymphoma 2014 (PubMed)
- Ellis, Barbui and Tefferi, Polycythemia vera, Mayo Clin Proc 2026 (PubMed)