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.
- MPN Forum on Facebook
- MPN Interferon Forum (Myeloproliferative Neoplasm)
- MPD Myeloproliferative Disease Support
- Myelofibrosis Private Support Group
- Polycythemia Vera Support Group
- Polycythemia Vera PV Supportive Friends
- Essential Thrombocythemia Support Group
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.