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), Polycythemia Vera (PV), and Myelofibrosis (MF). All three have 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 can lead a fulfilling life with a substantial life expectancy. For the best possible outcomes and peace of mind, patients must learn about their disease and participate actively in their care. For example:
Download the MPN Patient Bill of Rights Infographic.
Diagnosis – Prognostic Scoring Systems: MIPSS, SSTT
Treatment – NCCN Guidelines for Patients | Myeloproliferative Neoplasms.
Impact on Reproductive Health – MPNRF’s Women and MPNs
Financial support – Financial Resources
Access to treatments – NCCN Guidelines for Patients | MPNs
Access to Information and ways to seek help – MPN Patient Resources
Quality of life – Nutrient Study and Yoga Study
Caregiver support – Caregiver Resources
Workplace structure
Clinical trial information – MPN Clinical Trials
Created in partnership by the MPN Research Foundation, MPN Advocacy & Education International, Leukemia & Lymphoma Society, MPN Education Foundation, Patient Power, CancerCare, National Organization for Rare Disorders, Cancer Support Community and PV Reporter.