While MPN are considered rare or “orphan” diseases, they afflict people all around the world. Here are foundations and patient resources beyond the United States.
ON-LINE PATIENT-TO-PATIENT COMMUNITIES
Thanks to technology, MPN patients and care givers can connect with others around the world. These resources have participants from most every continent.
MPN-NET: http://listserv.acor.org subscribe (it’s free!) with email to firstname.lastname@example.org
Discussions include patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices and alternatives. The principal focus is expected to be information and reassurance for patients and loved ones.
Facebook MPN Groups & Pages
There are numerous groups on Facebook. Some are “open” and others are “closed” (you request access and be approved by an administrator).
Each group has its own culture and groundrules. They are administered by patients or care givers of MPN patients. They tend to have a certain topical focus, and many of us participate in several groups.
Most groups are “closed” to protect the discussions from showing up on newsfeeds, getting personal information shared with marketers, etc.
A Friendly Note about Facebook and Social Media:
Some people have created a Facebook account with a pseudonym for the purpose of maintaining some privacy. Some people have done so for more nefarious purposes (collecting patient data without consent, selling, spam). So if you do so and request to join a group, consider informing the administrator so they will favorably consider your request.
ORGANIZATIONS OUTSIDE THE UNITED STATES
MPD-OZ http://mpd-oz.org email: email@example.com (Ken Young)
Leukemia Foundation http://www.leukaemia.org.au/blood-cancers/blood-cancer-support-and-advice
Funds research and provides free services and support to people with Leukaemia, Lymphoma, Myeloma, MPN, MDS, and related blood disorders.
MPN Alliance Australia Contact: Jolanda Visser firstname.lastname@example.org
Fighting Leukemia Public Union Contact: Baghirova Mehriban: email@example.com
Canadian MPN Network http://www.canadianmpnnetwork.ca email: firstname.lastname@example.org Toll Free : 844-644-6766
British Columbia: Vancouver Contact: Mark Williams email@example.com
Alberta: Edmonton Contact: Cheryl and Eugene Petruk firstname.lastname@example.org
Saskatchewan No current group established Contact Alberta group
Manitoba No current group established Contact Alberta or Ontario group
Ontario: Hamilton Contact: John Clark email@example.com
Toronto Contact: Kevin Brown firstname.lastname@example.org
Kitchener/Waterloo Contact: Joanne McKinney JMcki99425@aol.com
Windsor Contact: Jane Fleming Janefleming62@gmail.com
Ottawa Contact: Phil Arner email@example.com
Quebec Contact: Cheryl Petruk firstname.lastname@example.org
Newfoundland and Atlantic Provinces Contact: Simon Lono email@example.com
The Max Foundation www.themaxfoundation.org
MPN Support Program: Day by Day Contact: Lyat Granati Espinosa Lyat.firstname.lastname@example.org
Danish MPN Patient Organization Contact: John Jensen: email@example.com
MPN Voice www.mpdvoice.org.uk/ MPN Voice is a UK based web site and team that provides information and support to those diagnosed with a myeloproliferative neoplasm (MPN). MPN Voice has members across the UK and worldwide. It organises regional patient forums in the UK and co-ordinates a Peer Support programme to allow people with MPNs to contact other more experienced patients.
Association ALTE-SMP http://alte-smp.org
MPN-Netzwerk, eV www.mpn-netzwerk.de
Contact: Rainer Kuhlmann firstname.lastname@example.org
Contact: Werner Zinkand email@example.com
National Cancer Registry Ireland http://www.ncri.ie/
The Flute of Light Contact: Erez Rasilevski Erez.firstname.lastname@example.org
MPN Advocates Network Contact: Robert Zelig email@example.com
Gruppo AIL Pazienti MMP Ph- (AIL MPN Patient Group) Contact: Massimiliano Donato firstname.lastname@example.org
Contact: Kaori Taki email@example.com
REPUBLIC OF KOREA
Korea Blood Cancer Association Contact: 김민정 Min Jeong Kim firstname.lastname@example.org
MPN Stichting http://www.mpn-stichting.nl
Landsverk Norwegian Blood Cancer Contact: Inger Margrethe Inger.Landsverk@mimer.no
APCL Associação Portuguesa Contra a Leucemia www.apcl.pt
Contact: Lara Cunha email@example.com
UMF Association Association for help to patients with Myelofibrosis
Contacts: Sanja Kotur and Jelena Lamovec firstname.lastname@example.org
Association of Patients with Haematological Malignancies http://www.hematologickypacient.sk
This is a citizen’s association to actively represent and promote interests of patients with haematological cancer-related diseases in exercising their right to health care leading to the prolongation of life and improvement of its quality. Provides free legal advice, patient education and support.
Contact: Katarína Fedorová Katarina1.email@example.com
Contact: Kristina Modic Modic.firstname.lastname@example.org
AEAL – Association for Lymphoma, Myeloma, and Leukemia patients. www.aeal.sp
Contact: Paloma Hernández email@example.com
MPN Patient Support Association Switzerland Contact: Peter Löffelhardt firstname.lastname@example.org
If you know of other great patient resources, pass them along to us at email@example.com