MPN Patient Resources
MPNs: a guide for patients & families
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.
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.
The Leukemia & Lymphoma Society of Canada (LLSC) is a voluntary health agency dedicated to blood cancers. They provide free information and support services to patients and caregivers.
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.
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
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
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.
Find an MPN Treatement Centre
British Columbia | Alberta | Saskatchewan | Ontario | Quebec | Nova Scotia
British Columbia
St Paul’s Hospital (Providence Hematology)
490-1144 Burrard Street
Vancouver, BC
V6Z 2A5
Referrals accepted from physicians and advanced practice nurses.
Contact: Dr Lynda Foltz
Tel 604.684.5794 x2
Fax 604.684.5705
Alberta
University of Alberta
Division of Clinical Hematology
4-112 Clinical Sciences Building
11350 – 83 Avenue
Edmonton, AB T6G 2G3
Referrals accepted from physicians and advanced practice nurses.
Contact: Dr Bob Turner / Dr Joe Brandwein
Fax 780.407.2680
The Tom Baker Cancer Centre
Division of Hematology and Hematologic Malignancies
1331 29 Street Northwest
Calgary, AB T2N 4N2
Referrals accepted from physicians only.
Contact: Chery Howe RN, Central Triage
Tel 403.521.3824
Fax 403.521.3161
Saskatchewan
Saskatchewan Cancer Agency – Allan Blair Cancer Centre
Hematology Department
4101 Dewdney Avenue
Regina, SK S4T 7T1
Referrals accepted from physicians and advanced practice nurses.
Contact: Dr Ibraheem Othman
Tel 306.546.1525
Fax 306.546.1618
Ontario
Juravinski Cancer Centre
699 Concession St.
Hamilton, ON L8V 5C2
Referrals accepted from physicians only.
Contact: Dr B Leber
Tel 905.387.9711 x63410
Fax 905.575.6316
Princess Margaret Cancer Centre
610 University Avenue
Toronto, ON M5G 2M9
Referrals accepted from physicians only.
Contact: Nancy Siddiq
Tel 416.946.4501 x3047
Fax 416.946.2900
Referrals must be faxed to the New Patient Referrals Department, marked “for the attention of Nancy Siddiq”
Stronach Regional Cancer Centre at Southlake Regional Health Centre
596 Davis Drive
Newmarket, ON L3Y 2P9
Contact: Intake & Referral Office
Tel 905-895-4521 x660
Fax 905-952-2820
Referrals must be faxed, and will be triaged to see one of the following physicians:
Dr Peter Anglin, Dr Cynthia Luk, Dr Yasmin Rahim, Dr Sophia Farooki
Simcoe Muskoka Regional Cancer Program
Oncology Department
201 Georgian Drive
Barrie, ON L4M 6M2
Referrals accepted from physicians only.
Contact: New Patient Referrals Department
Tel 705.728.9090 x43334
Fax 705.792.3325
Referrals must be marked “for the attention of Dr Rouslan Kotchetkov”
Thunder Bay Regional Health Sciences Centre
980 Oliver Road
Thunder Bay, ON P7B 6V4
Referrals accepted from physicians and advanced practice nurses.
Contact: Dr Nicole Laferrière
Tel 807.684.7200
Fax 807.684.5808
Quebec
CHU de Québec, Hôpital de l’Enfant-Jésus
1401 18ième Rue
Québec City, QC G1J 1Z4
Referrals accepted from physicians only.
Contact: Dr Robert Delage
Tel 418.649.5726
Fax 418.649.5720
Jewish General Hospital
3755 Chemin de la Côte-Sainte-Catherine, Room E-725
Montreal, QC H3T 1E2
Referrals accepted from physicians (preferred) and patients.
Contact: Hematology MPD Clinic
Tel 514.340.8707
Fax 514.340.8733
Referrals should be marked “for the attention of Dr Shireen Sirhan”
Hôpital Maisonneuve-Rosemont
5415 boul de l’assomption
Montreal, QC
H1T 2M4
Referrals accepted from physicians only.
Contact: Dr Lambert Busque
Fax 514.254.5094
Nova Scotia
Nova Scotia Health Authority – Central Zone
QEII Health Sciences Centre
Division of Hematology
1276 South Park Street, Rm. 430 Bethune Bldg. VG Site
Halifax, NS B3H 2Y9
Referrals accepted from physicians and advanced practice nurses.
Contact: Dr Stephen Couban
Tel 902.473.8562
Fax 902.473.4600