PV Reporter is focused on providing “easy access” to research data, news reports, stories, and helpful hints designed to assist the Polycythemia Vera patient while also providing valuable resources for ALL MPN PATIENTS. Since the three diseases are all related bone marrow disorders, significant content will cover the entire MPN spectrum.
Every treatment has risks & rewards. The “informed patient” has a much better opportunity for a better quality of life.
There are many disparate MPN resources on the web. PV Reporter covers all three Myeloproliferative Neoplasms (MPN) – Polycythemia Vera (PV), Essential Thrombocythemia (ET), and Myelofibrosis (MF).
Be sure to check out our list of MPN specialists, it’s updated regularly.
Resources and Programs for MPN Patients (updated for 2024)
Checkout the wide range of resources available for MPN/Cancer patients. Provided by our non profit sister organization MPN Cancer Connection (MPN-CC).
Click on the image below for co-pay and medication assistance, help with airfare, MPN websites and numerous resources.
MPN Resource Websites
- The American Society of Hematology: Find a Hematologist
- The Bone Marrow Foundation
- CancerCare Inc.
- Cancer Support Community
- The Leukemia & Lymphoma Society
- MPN Cancer Connection
- MPN Voice
- MPN Advocacy & Education
- MPN Education Foundation
- MPN Research Foundation
- National Marrow Donor Program
- Patient Power
- PV Reporter
Polycythemia Vera Resources
- Polycythemia Vera – Frequently Asked Questions (detailed FAQs on PV)
- Leukemia & Lmphoma Society – Polycythemia Vera
- Merck Manual – Polycythemia Vera
- MPN Research Foundation – Polycythemia Vera
- MPD Voice – Polycythemia Vera
- Blood Journal – Polycythemia Vera search results
- Polycythemia Vera – Detailed Facts
- Patient Help – Clinical Features, Signs and Symptoms of PV
Additional MPN Resources
- Mapping Myelofibrosis
- PharmaEssentia Source
- Voices of MPN
- Clinical Trials
- PubMed search results for Myeloproliferative Neoplasms
Facebook Groups – These are closed groups and require you to request to join
- MPN Investigation & Discovery
- Polycythemia Vera Support Group
- Myelofibrosis Private Support Group
- MPN Interferon
- Polycythemia Vera, an MPN Support Group
- Essential Thrombocythemia
- Jakafi (Ruxolitinib) Treatment for MPNs
- Polycythemia, Secondary Polycythemia, Erythrocytosis Support
- MPNs R Us
SMOKING
- Whatever you do, one of the first recommendations for an MPN patient who smokes is QUIT – Quit smoking for good, here is an excellent website with many resources to help you quit smoking. Smoking is linked with increased risk of Myeloproliferative Neoplasms.
