MPN Resources around the World

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 listserv@listserv.acor.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

AUSTRALIA

   MPD-OZ       http://mpd-oz.org          email:  info@mpd-oz.org     (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            mpnaa.jolanda@gmail.com

 

AZERBAIJAN

   Fighting Leukemia Public Union               Contact:          Baghirova Mehriban: mehriban63@mail.ru

 

BELGIUM

   MPN Belgium vzw             www.mpnbelgium.org           Contact:          Ilse Jans         info@mpnbelgium.org

   Association ALTE-SMP   (French)       http://alte-smp.org          Contact:          Philip Ciesla    cieslaphilip@hotmail.com

 

BRAZIL

   ABRALE – Brazilian Lymphoma & Leukemia Society      www.abrale.org.br     Contact:          Fernanda de Carvalho Geiger            Fernanda@abrale.org.br

CANADA

   Canadian MPN Network     http://www.canadianmpnnetwork.ca                 email:  canadianmpnnetwork@gmail.com                Toll Free :  844-644-6766

   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                        jwclark@gmail.com 
                       Toronto     Contact: Kevin Brown         kb@iconhomes.com
                       Kitchener/Waterloo Contact: Joanne McKinney    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

   Newfoundland and Atlantic Provinces Contact: Simon Lono          simonlono@gmail.com

CHILE

The Max Foundation     www.themaxfoundation.org

MPN Support Program: Day by Day       Contact:          Lyat Granati Espinosa            Lyat.granati@themaxfoundation.org

 

DENMARK

   Danish MPN Patient Organization          Contact:          John Jensen:  johnilsoejensen@webspeed.dk

Facebook page:

 

ENGLAND/UK

   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.

 

FINLAND

   Association of Cancer Patients in Finland      http://www.syopapotilaat.fi/     Contact:          Minna Anttonen           Minna.anttonen@syopapotilaat.fi

 

FRANCE

     Association ALTE-SMP     http://alte-smp.org

 

GERMANY

     MPN-Netzwerk, eV       www.mpn-netzwerk.de

Contact:          Rainer Kuhlmann   r.kuhlmann@mpn-netzwerk.de

Contact:          Werner Zinkand           w.zinkand@mpn-netzwerk.de

 

HUNGARY

     MOHA – Foundation for Hungarian Oncohaematological Patients     www.onkohemat.hu      Contact:          Ibolya Kéri       moha@onkohemat.hu

 

IRELAND

   National Cancer Registry Ireland     http://www.ncri.ie/

ISRAEL

    The Flute of Light      Contact:          Erez Rasilevski           Erez.rasi@gmail.com

    MPN Advocates Network     Contact:          Robert Zelig    fridarobi@gmail.com

 

ITALY

     Gruppo AIL Pazienti MMP Ph-   (AIL MPN Patient Group)         Contact:   Massimiliano Donato          ailpazienti@ail.it

    AIPAMM – Ares Roma     www.aipamm.it          Contact:          Peter Lercher               peterlercher@aipamm-aresroma.it

 

JAPAN

     MPN-Japan       http://mpn-japan.org          http://facebook.com/mpnjapan

Contact:          Kaori Taki                    mpn_japan@yahoo.co.jp

 

REPUBLIC OF KOREA

     Korea Blood Cancer Association           Contact:          김민정 Min Jeong Kim hopecenter@hanmail.net

 

MACEDONIA

     BORKA – For Each New Day          www.borka.org.mk      Contact:          Mirjana Babamova            Mirjana.babamova@borka.org.mk

NETHERLANDS

   MPN Stichting     http://www.mpn-stichting.nl

 

NORWAY

     Landsverk Norwegian Blood Cancer         Contact:          Inger Margrethe           Inger.Landsverk@mimer.no

 

PORTUGAL

     APCL Associação Portuguesa Contra a Leucemia        www.apcl.pt

Contact: Lara Cunha             laracunha@apcl.pt

 

SERBIA

    UMF Association           Association for help to patients with Myelofibrosis

Contacts:        Sanja Kotur and Jelena Lamovec       udruzenjemijelofibroze@yahoo.com

 

SLOVAKIA

     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.federova@gmail.com

 

SLOVENIA

Slovenian Lymphoma and Leukemia Patient Association, L&L           www.limfom-levkemija.org          www.majboljsanovica.si

Contact:   limfom.levkemija@gmail.com

Contact:          Kristina Modic              Modic.kristina@gmail.com

 

SPAIN

     AEAL – Association for Lymphoma, Myeloma, and Leukemia patients.     www.aeal.sp

http://www.aeal.es/sindromes-mieloproliferativos-espana/

Contact:          Paloma Hernández                  secretaria@aeal.es

 

SWEDEN

     Blodcancerförbundet     www.blodcancerförbundet.se        Contact:      Lise-lott Eriksson         Lise-lott@blodcancerforbundet.se

 

SWITZERLAND

     MPN Patient Support Association Switzerland            Contact:          Peter Löffelhardt                      pelo.globe@gmail.com

 

UNITED KINGDOM

     MPN Voice      www.mpnvoice.org          Contact:      Jon Mathias, Chairman        Jon.mathias@iname.com

If you know of other great patient resources, pass them along to us at mpnbuddies@gmail.com

 

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