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

British Columbia


Contact: Mark Williams



Contact: Cheryl and Eugene Petruk


No current group established
Contact Alberta group


No current group established
Contact Alberta or Ontario group


MPN Ontario


Contact: John Clark 


Contact: Kevin Brown


Contact: Joanne McKinley


Contact: Jane Fleming


Contact: Phil Arner


Contact: Cheryl Petruk

Newfoundland and Atlantic Provinces

Contact: Simon Lono

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.