Patient & caregiver resources
MPN Patient Bill of Rights
MPNRF’s 
MPN Patient Bill of Rights helps establish and promote awareness of core elements central to quality MPN patient care. Myeloproliferative Neoplasms (MPNs) includes three closely related chronic blood cancers: Essential Thrombocythemia (ET), Myelofibrosis (MF), and Polycythemia Vera (PV) with signs and symptoms that vary in occurrence and severity and may progress over time. People who receive a rare MPN diagnosis may feel isolated and fearful of shortened life but many or most can lead a fulfilling life with a substantial life expectancy.
Patients must learn about their disease and participate actively in their care. For example:
MPN Patient Bill of Rights helps establish and promote awareness of core elements central to quality MPN patient care. Myeloproliferative Neoplasms (MPNs) includes three closely related chronic blood cancers: Essential Thrombocythemia (ET), Myelofibrosis (MF), and Polycythemia Vera (PV) with signs and symptoms that vary in occurrence and severity and may progress over time. People who receive a rare MPN diagnosis may feel isolated and fearful of shortened life but many or most can lead a fulfilling life with a substantial life expectancy.
Patients must learn about their disease and participate actively in their care. For example: - MPN diagnosis and prognostic scoring systems
- Treatment plan guidelines, information and access to treatments
- Financial support resources
- Access to accurate information and ways to seek reputable help
- Clinical trial information
- Caregiver support resources
- Quality of life and work place expectations
Information on these topics and more is available by visiting our MPN Patient Bill of Rights page.
Useful Resources
We have compiled some of the best online resources for information about polycythemia vera, essential thrombocythemia, and primary myelofibrosis. Finding a hematologist, accessing primary medical research reports or gaining more information on MPNs is available through the links below:
- The American Society of Hematology: Find a Hematologist
- Aplastic Anemia & MDS International Foundation
- The Bone Marrow Foundation
- CancerCare Inc.
- Cancer Research & Treatment Fund
- Cancer Support Community
- The Leukemia & Lymphoma Society
- The Mastocytosis Society
- MPD Voice
- MPN Canada
- MPN Education Foundation (formerly CMPD)
- MPN Forum
- MPN Quarterly Journal
- National Marrow Donor Program
- NORD (National Organization for Rare Diseases)
- PV Reporter
