Thanks to technology, no one has to go through the MPN experience alone. MPN patients and their care givers are some of the nicest people around. They provide encouragement and insights with each other in many ways. Some special friendships have formed as a result of the MPN diagnoses.
Support is available in several ways, and many people participate in several:
- Local In-person Support Groups
- Online Support Groups
- Patient Education Conferences and Symposia
- Peer to Peer Support
IN-PERSON LOCAL Support Groups
There are local/statewide support groups in many states across the country. The most up-to-date contact info is on the MPN Advocacy & Education International Support Group page. Some have Facebook pages. Here are two that I found. If you know of others, please share them with us at: mpnbuddies@gmail.com
ON-LINE PATIENT-TO-PATIENT COMMUNITIES
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.
MPNRF Community MPNRFcommunity.org
Hosted by the MPN Research Foundation, this CancerConnect Community discussion site is for MPN patients to ask questions, share information, and learn the latest news from the MPN science and medical worlds. Registration is required for participation.
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. The list below contains the larger groups. There may be others that start up
MPNforum
Essential Thrombocythemia Support Group
Essential Thrombocythemia
Polycythemia Vera support group
Polycythemia Vera –> Friends & Family Support Group
Polycythemia Vera
Myelofibrosis Private Support Group
Myelofibrosis Later Stage private support group Trials vs SCT/BMT
MPN Interferon Forum – Myeloproliferative Neoplasm
MPD Myeloproliferative disease support
MPN Support Group
A Friendly Note about Facebook and Social Media:
Some people create 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 use a pseudonym and request to join a group, consider informing the administrator so they will favorably consider your request.
MPD Chat MPD/MPN Chat – email group
MPD Chat is a Google group where members share information, ask questions, and generally connect with others living with a MPN.
PATIENT EDUCATION CONFERENCES & SYMPOSIA
MPN Advocacy & Support International holds day-long conferences for MPN patients in cities around the country.
MPN Education Foundation holds a bi-ennial Patient/Physician two-day conference with Mayo Clinic in Scottsdale, Arizona.
Cancer Research & Treatment Fund holds a one-day International MPN Patient Symposium that precedes a two-day International Congress on MPN for researchers and clinicians in New York City.
INDIVIDUAL PEER-TO-PEER SUPPORT
There have been informal conversations about organizing a buddy service for MPN patients, by phenotype (ET, PV, MF). In the meantime, some “long-timers” are registered with these two nonprofits.
LLS’s First Connection: http://www.lls.org/support/peer-to-peer-support
The Patti Robinson Kaufmann First Connection Program connects patients to volunteers who have experienced the same illness. First Connection volunteers must be trained and vetted by LLS to listen and know about resources that can benefit the patient. Their online chats and discussion boards are not very active on MPNs, perhaps because of the other groups mentioned here.
Imerman Angels: http://www.imermanangels.org
Offers peer support from people who have gone through this already – both patients and caregivers. They match by disease, age, gender, to strengthen the relationship. They have “mentor angels” who provide support in the United States and 60 other countries.
CANCER SUPPORT ORGANIZATIONS
CancerCare Inc. www.cancercare.org
Cancer Care provides free professional support services for coping and managing the emotional and practical challenges arising from cancer.
Cancer Support Community www.cancersupportcommunity.org
CSC is an international non-profit organization dedicated to providing support, education and hope to people affected by cancer. They have offices in several cities, each with local services for patients and care givers.
LiveStrong Foundation www.livestrong.org
ORGANIZATIONS OUTSIDE THE UNITED STATES
AUSTRALIA
MPN Alliance Australia http://leukaemia.org.au/mpn-alliance-australia
The MPN AA was formed in 2015 by motivated MPN patients to increase awareness and understanding of MPNs and the plight of patients; and unify the Australian MPN community by sharing information and vital links to resources, organizations and support. They also have a Facebook page: https://www.facebook.com/MPNAllianceAustralia/
MPD-OZ http://mpd-oz.org email: info@mpd-oz.org (Ken Young)
CANADA
Canadian MPN Network http://www.canadianmpnnetwork.ca email: canadianmpnnetwork@gmail.com Toll Free : 844-644-6766
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.
contact us at mpnbuddies@gmail.com
