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MPN Resources

Canadian MPN Network

MPN Specialists in Canada

Following your diagnosis, you may be referred to a specialist.  The types of specialists you may be referred to depend on your MPN. Many Canadian doctors who treat people with MPNs are members of the Canadian MPN Group. Visit the Group’s website by clicking here. To go directly to the “Finding an MPN Center,” page, click here.

Current Clinical Trials

To locate MPN-related clinical trials across Canada go to: www.canadiancancertrials.ca. Another very useful website for clinical trials is the US Clinical Trials website which tracks trials all over the world: clinicaltrials.gov

  • Myelofibrosis (MF)
  • Polycythemia Vera (PV)
  • Essential Thrombocythemia (ET)

Useful Websites & Organizations

Other websites you might find useful are listed in this section. While we consider the organizations behind these websites to be very reputable, the Canadian MPN Network is not responsible for any of the content on these websites. (Click on the Group header to go that group.)


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The Canadian MPN Research Foundation was established in 2018 to stimulate and fund new and existing research initiatives and projects for Myleoproliferative Neoplasm Blood Cancers in Canada.

Formed in 2014, the Canadian MPN Group is a group of Canadian health care professionals interested in promoting clinical care, clinical or laboratory research, and support for patients with an MPN.

The CML-MPN Quebec Research Group is a non-profit organization of Quebec hematologists founded in 2011. It aims to facilitate innovative clinical research in CML and MPNs, optimize clinical management of CML and MPNs, including facilitating the transfer of new research findings into clinical practice, and offer continuing professional development opportunities to its members about CML and MPNs.

CORD is Canada’s national network for organizations representing all those with rare disorders

The Leukemia & Lymphoma Society of Canada (LLSC) is a non-profit organization dedicated to funding blood cancer research and providing patient education and patient support.

The Canadian Cancer Society is a national, community-based organization of volunteers whose mission is the eradication of cancer and the enhancement of the quality of life of people living with cancer.

Wellspring is a network of community-based support centres offering programs and services that meet the emotional, social, practical and restorative needs of people living with cancer and those who care for them.

United States

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The MPN Research Foundation’s goal is to stimulate original research in pursuit of new treatments – and eventually a cure for PV, ET and MF.

MPNforum magazine is an open-source magazine founded in 2011 along with the MPN Quarterly Journal (see below). It publishes stories, features and by-line columns that impact the patients suffering from myeloproliferative neoplasms. The Forum independently reports on events, people and scientific research affecting the MPN community.

Published by MPNForum, the MPN Quarterly Journal is an online journal that provides “commentary on the season’s scientific findings and MPN events.”

MPN Advocacy and Education International is dedicated to providing knowledge, support and resources for patients with myelofibrosis, polycythemia vera, and essential thrombocythemia as they adjust to living with an MPN.

The American Society of Hematology (ASH) is a professional organization representing hematologists. It was founded in 1958 and holds an annual meeting in December of every year that attract thousands of medical professionals. The site offers access to professional medical papers. Use the SEARCH box at top right of screen to look for articles related to your MPN.

Blood is a peer-reviewed medical journal published by ASH (American Society of Hematology) Content is accessible online.

Patient Power, hosted by Andrew Schoor, contains a number of informative videos of interviews with well-known MPN medical specialists. To access the MPN section of this website: Click “Myeloproliferative Neoplasms” in the menu on the left side of the screen.

PV Reporter was created to provide “easy access” to pertinent information on PV, ET and MF by utilizing a custom search engine, MPN Search, which indexes research data, reports, stories, and news items from some of the best reference sources in the MPN world.

The National Cancer Institute is the United States government’s principal agency for cancer research.

Cancer Support Community describes itself as “A Global Network of Education and Hope.” CSC services include support groups, educational programs, healthy lifestyle classes, opportunities for social networking and help locating resources.

Health information from one of the leading medical centres in the United States. Search on the site for the topic you are interested in.

Health information from one of the leading medical centres in the United States. Search on the site for the topic you are interested in.

The NCCN is an alliance of 27 leading cancer centers in the US and they have published an excellent guide on MPN’s.

United Kingdom

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Disease and health information about MPNs.

MPD Voice is a British MPN site that offers a number of resources about myeloproliferative disorders (MPDs), living with MPDs, treatments and research. Note: Descriptions, names of disorders and treatments may differ from what they are called in Canada (e.g. hydroxyurea is called “hydroxycarbamide”).

Frequently Asked Questions (FAQs)

The exact cause remains unknown but MPNs are monoclonal blood cell disorders. This means that MPNs result from a change in the DNA of a single blood stem cell, which leads to too many abnormal cells developing. This problem becomes more widespread when the original affected stem cell divides and produces clones which all have the same defect.

Doctors don’t know exactly why some people get them but there are a few factors that may raise your risk:

  • Exposure to certain chemicals and to radiation might increase your chances but it’s unusual to be around levels that are high enough to cause illness.
  • One study found a history of any autoimmune disease – illnesses where your body’s immune system becomes overactive and attacks your body’s own tissues, such as Crohn’s disease or hypothyroidism – could raise your risk.
  • Family history might play a part. MPNs aren’t hereditary, and the gene mutations are acquired during someone’s life, rather than being passed on from a parent. But first-degree relatives often have the same genetic tendency that predisposes people to develop MPNs.
  • Age is key – the majority of people with MPNs are over 60.
  • Gender is a risk factor for PV as it affects slightly more men, and in ET which affects more women than men. MF affects men and women in roughly equal numbers.
  • Your race might play a role – research has shown that MF is more common in white people and Ashkenazi Jews.

MPNs are considered rare diseases, which is why you may never have heard of them until you were diagnosed. In the US, a study in 2010 showed MF affected just 3.6 to 5.7 people for every 100,000 population while there were 45-57 cases of PV per 100,000 and 39-57 cases of ET per 100,000.The accepted Canadian definition of a rare disease is one that affects fewer than 50 people out of 100,000, so it’s not surprising most people haven’t heard of MPNs.

Cancer occurs when normal cells grow in an uncontrolled way, and there has been some debate in medical circles about whether or not MPNs are types of cancer.The Canadian Cancer Society refers to them as “disorders” among the different types of blood cancers (leukemia)while the Leukemia and Lymphoma Society of Canada calls them “blood cancers.”

This depends on the type of MPN you have and its severity, as well as your age and overall health. If your symptoms are not affecting your day-to-day quality of life, your doctor may suggest they monitor the progression of your condition with regular check-ups. This approach is known as “watch and wait.” If you feel unwell, speak with your doctor.

MPNs can’t be cured, with the potential exception of MF in a small minority of people who have a bone marrow or stem cell transplant. Patients are individually assessed as transplants are not commonly recommended. This is due to a high risk of life-threatening side effects, as well as a risk that the new stem cells will react against your body’s healthy tissues. Transplants are often only considered an option for fit patients with advanced disease. The first step involves very high levels of chemotherapy or radiation therapy.

For information about managing MPNs, click here

MPNs largely affect men and women over 60,or whom pregnancy isn’t on the agenda, but they can sometimes develop in people of childbearing age, too. As MPNs are rare, very little research has been done in this area so there are no specific guidelines for doctors. While pregnancy isn’t thought to affect MPNs, how your symptoms are managed may have an effect. Plus, there are extra considerations for pregnant women with MPNs, as pregnancy may further increase the risk of having a blood clot.If you’re thinking about trying to conceive, always speak to your doctor about whether now is the best time. And if you do become pregnant, be aware that you’ll need specialist care.



Blood cells: These develop from stem cells and are formed in the bone marrow. There are three types: red and white blood cells and platelets.

  • White blood cells: These fight infection and disease and there are several types, including neutrophils and lymphocytes, which all play different roles in helping your body fight infections.
  • Red blood cells: Carry oxygen around the body in the bloodstream.
  • Platelets: These help your blood to clot.

Bone marrow: The soft, spongy substance that fills the inner cavities of the bone. It’s where white blood cells, red blood cells and platelets are formed and it also contains fluid, blood vessels and fat.

Calreticulin (CALR) mutation: The calreticulin (CALR) gene was discovered in 2013 and while it is not yet fully understood, it is known that mutations in the CALR gene lead to too many platelets being produced. About 24% of people with MF and 30% of people with ET will have the CALR gene mutation.

Hemoglobin: The protein in red blood cells that carries oxygen.

JAK pathway: The Janus Kinase pathway, to give it its full name, is a chain of signals linked to the production of blood cells. If the chain goes wrong, it’s known as a dysregulated

JAK pathway and leads to MPNs.

JAK2 molecule: A molecule present in everyone’s body, which passes messages within a cell.

JAK2V617F mutation: A change in the JAK2 molecule, which triggers a dysregulated JAK pathway. The JAK2V617F mutation is found in 90-95% of people with polycythemia vera (PV), and in around 60% of those with essential thrombocythemia (ET) and 50% to 60% of people with primary myelofibrosis (MF).

MPL mutation: A change in the MPL gene that triggers stem cells to start producing platelets even when levels of platelets in the blood are not low, resulting in too many platelets. Between 5 and 10% of patients with MF and 5% of people with ET have an MPL gene mutation.

Philadelphia chromosome: A chromosomal abnormality found in people with chronic myeloid leukaemia (CML), a related condition. As PV, ET and MF are Philadelphia chromosome-negative, its absence will help your doctor diagnose the condition you have.

Stem cells: Immature cells that can develop in the bone marrow. Stem cells are able to develop into many different cell types, including blood cells. They can keep dividing, developing into mature blood cells to replenish cells in the body.

“It’s useful to remember that MPNs are chronic diseases – in most cases they remain stable for many years or may progress gradually over time. Many people with MPNs live normal lives for years without experiencing complications.”

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To make a donation to further research go to the Canadian MPN Research Foundation at https://www.cmpnrf.ca/