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 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
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: