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Patient Support Groups

When you’ve been diagnosed with a rare disease such as MF, PV or ET it’s not unusual to feel isolated. But there are thousands of others who have walked the path before you who are willing to share their experiences and advice.

If there is no in-person support group in your area, consider starting one. Or join an online discussion group and chat with other patients and caregivers from around the world.

In-person patient support

Canadian MPN Network

Patient Advocacy Group
1-844-644-6766 (MPNN)

Cheryl Petruk
canadianmpnnetwork@gmail.com
780-940-6569

British Columbia

Vancouver

Contact: Mark Williams
mark.mpn.vancouver@gmail.com

Alberta

Edmonton

Contact: Cheryl and Eugene Petruk
canadianmpnnetwork@gmail.com

Saskatchewan

No current group established
Contact Alberta group

Manitoba

No current group established
Contact Alberta or Ontario group

Ontario 

MPN Ontario

Hamilton

Contact: John Clark
jwhclark@gmail.com 

Toronto

Contact: Kevin Brown
kb@iconhomes.com

Kitchener/Waterloo

Contact: Joanne McKinley
JMcki99425@aol.com

Windsor

Contact: Jane Fleming
Janefleming62@gmail.com

Ottawa

Contact: Phil Arner
phil.arner@rogers.com

Quebec

Contact: Cheryl Petruk
canadianmpnnetwork@gmail.com
780-940-6569

Newfoundland and Atlantic Provinces

Contact: Simon Lono
simonlono@gmail.com

Facebook discussion groups

There are a number of active Facebook groups that provide a forum for discussion and information exchange about the MPN experience. Most are hosted by MPN patients, caregivers and their supporters. To protect the privacy of those contributing, these pages are generally set up as closed groups. You will need to become a member to view and post messages. Simply click on Join Group to contact the page administrator.

Other online support

MPN-NET online support group

The MPN-NET email list serves as a forum for patients with MPNs and their loved ones to exchange experiences on coping with the disease and to receive current information that may be hard to find. Those who join receive announcements and discussions about medical advances and therapeutic treatment, both mainstream and alternative. The group comprises over 3,000 patients, caretakers, doctors, nurses, and social workers from over 38 countries.

MPD-SUPPORT – Myeloproliferative Disease Support and Daily Email Digest

This website and email list offers interesting information on chronic myelogenous leukemia, polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia, myelodysplasia, and myelofibrosis. Patients, family members and health professionals are all welcome to join.

Related to this topic...

Information is power. Visit our MPN Patient Resources page to find more helpful resources.

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