Patient & caregiver resources

You and MPN

You and MPN is a free, multimedia educational program created by the MPN Research Foundation in collaboration with Mechanisms in Medicine to help people living with myeloproliferative neoplasms (MPNs) — including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) — better understand their disease and feel empowered in their care. Designed with patients, for patients, the program uses plain-language, visually engaging formats such as animated explainer videos, expert physician Q&A clips, a real patient story, downloadable infographics, narrated slideshows, and learning quizzes. Its goal is to support informed decision-making, improve patient-provider communication, and encourage active participation in care, whether someone is newly diagnosed or seeking deeper knowledge about living well with an MPN.

You and MPN is made possible through independent educational grants from Disc Medicine, Incyte, Merck, and PharmaEssentia. We are grateful for their support.

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 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:  

If you know of an organization that should be added to this list please send an email to communications@mpnrf.org

Find a hematologist

Access resources to help locate a hematologist that specializes in MPNs.

Just diagnosed?

Learn about 10 steps you can take

READ MORE

Find support with others living with ET, PV, and MF

SUPPORT RESOURCES