MPN Patient Resources
This booklet was developed by the Elizabeth and Tony Comper MPN Program at Princess Margaret Cancer Centre, Toronto, for use in their MPN clinic.
This booklet covers the basics on MPNs. This includes:
- What MPNs are
- What symptoms to expect
- Living with an MPN
- Treatments you may be offered
- Support groups and where to get more information
This booklet is only intended for general information purposes and not to diagnose, treat, cure or prevent disease. Please consult your physician for medical advice.
The MPN Research Foundation is a non-profit organization whose mission is to promote, fund and support the most innovative and effective research into the causes, treatments, and potentially the cure for polycythemia vera, essential thrombocythemia and myelofibrosis.
Based in the UK and established by a group of MPN patients, MPD Voice has an active online community and up-to-date information on essential thrombocythemia, polycythemia vera and myelofibrosis.
MPN Advocacy and Education International is dedicated to providing information, support and resources for patients as they adjust to living with an MPN. The group conducts educational symposia in several cities each year, hosts webcasts, and provides collateral material and direction to additional resources.
A U.S.-based non-profit organization run by volunteer MPN patients, the MPN Education Foundation hosts patient-doctor conferences to improve patient knowledge about their MPNs and to give patients the opportunity to meet with top MPN specialists.
MyelofibrosisAwareness.org (The MPN Coalition)
The MPN Coalition provides a forum for discussion of and action on the needs and challenges faced by those living with and affected by MPNs, including myelofibrosis. The Coalition aims to create greater awareness of these rare diseases and to enhance education and access to care.
For patients with mastocytosis, the Mastocytosis Society Canada provides compassionate counselling and support, patient and family education, and resources to help you find healthcare providers and other related services.
The Canadian Cancer Society website is a good general resource on MPN, providing an overview of signs and symptoms, diagnosis and treatment options for polycythemia vera, essential thrombocythemia and idiopathic myelofibrosis.
Patient Power® is devoted to helping cancer patients and their families through knowledge. It is built on a library of programs organized into health centres, including an MPN health centre that provides helpful videos, news and tips.
The Leukemia & Lymphoma Society (LLS) is the world’s largest non-profit health agency dedicated to helping patients with blood cancer and their families. LLS funds blood cancer research around the world and provides free information and support services to patients and their families.
For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research and providing patient and family services for those who need them most.