ONLINE PATIENT SUPPORT GROUPS
There are many online forums and groups organized around MPNs. These are easy ways to get introduced to people with PV, ET, and MF. Caregivers also participate in online forums, and they are excellent formats in which to share information.
ONLINE FORUMS
MPNRFCommunity.org – Online discussion group hosted by MPN Research Foundation. We invite you to register to get the most out of your experience on As a member of the community you have full access to all posts, chats, surveys, and other community activities. It’s important to complete your profile so we can get to know you better. Then, you can connect with other members who share your issues and concerns. You can chat with them one-to-one or as a member of a community discussing topics such as clinical trials, nutrition, or treatment.
MPDchat & MPNchat – Come join us! We are a world-wide email support group of 1,125 ET, PV, and MF patients representing 46+ countries. Here you’ll find others that remember all too well what it was like to have more questions than answers. No question too simple or too complex to ask. We’re here for you!
MPN-Net – MPN-Net is an online support group hosted by MPN Education Foundation, it answers frequently asked MPN questions, offers biographies and medical resources for polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia (Idiopathic Myelofibrosis), and on chronic myelogenous leukemia (CML).
The Leukemia & Lymphoma Society’s Community – A virtual meeting place for cutting-edge information and updates on MPNs. Patients with MPNs and their caregivers can chat in a group space and also receive enhanced support from LLS Information Specialists, who deliver personalized resources. Diagnosis updates in video format feature renowned experts via our partner Patient Power. Summaries of recent medical journal articles are also posted.
MPN Interferon Forum – This forum is dedicated to MPNs and how interferon relates to their treatment, evolution, and future directions. It is open to anyone taking interferon, considering interferon, family members of those with MPNs who want to discuss interferon for treating any MPN.
Myeloproliferative Disease Support and Free Daily Email Digest – Since 1994, the MPDSUPPORT web site and free support email list have offered interesting information on chronic myelogenous leukemia, polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia, myelodysplasia, and myelofibrosis. Anyone – patient, family member, or health professional, is welcome to join the growing list of subscribers. The archives are available for you to research information. You can subscribe to the daily digest list by either one of our two easy methods, the EZ web interface, or by email.
POLYCYTHEMIA VERA SUPPORT GROUPS
Polycythemia Vera Support Group – This Facebook group for PV patients was created so that the few people living with Polycythemia Vera can connect with others who have this form of cancer for support, information, and knowledge that they are not alone
Polycythemia Vera Supportive Friends – A group for those diagnosed with Polycythemia Vera and their family and caregivers to share, learn, LAUGH and offer positive support and hope for each other.
Polycythemia Vera (PV) Support Group Philippines – Filipinos diagnosed with Polycythemia Vera (PV) and their family and friends.
Polycythemia Vera Support – The purpose of this group is to provide a source of inspiration and comfort amongst one another because despite your diagnosis you are still strong!
Polycythemia Vera Awareness – Interested in Polycythemia Vera Research Studies? Click the link in our profile to find a study near you.
ESSENTIAL THROMBOCYTHEMIA SUPPORT GROUPS
Essential Thrombocythemia Support Group – Diagnosis and Treatment of Essential Thrombocythemia (ET) ET is a chronic myeloproliferative disorder that primarily involves the megakaryocytic lineage, and is characterized by sustained thrombocytosis in the blood and increased numbers of large, mature megakaryocytes in the bone marrow.
Essential Thrombocythemia Support Group UK – Hi, I have set up this group to provide support for people who suffer from Essential Thrombocythemia (ET) and their families. This group is for the UK suffers only as I am a UK resident and can’t comment on treatment and management of ET in other countries
Women with Essential Thrombocythemia – Private group for women living with ET on Facebook. Given the rarity of the disease, it can be isolating. This group will chat, debrief, share information and ask questions– in a supportive, caring manner with members from all around the globe!
ET & MF / CALR Mutation Patients Support Group – Private support group for patients worldwide, diagnosed with ET ( Essential Thrombocythemia ) or MF ( Myelofibrosis ) with a CALR gene mutation. Do not forget we are all individuals, we will react differently to drugs, treatments …. of course, people with PV ( Polycythemia Vera ) and with other MPN mutations are welcome to join the group.
Essential Thrombocythemia – A Facebook support group for patients living with the myeloproliferative neoplasm, Essential Thrombocythemia or ET.
Got Essential Thrombocythemia? – Information and support for patients living with essential thrombocytosis and essential thrombocythemia
MYELOFIBROSIS SUPPORT GROUPS
Myelofibrosis Private Support Group – Welcome! We are a group of patients, caregivers, and friends who want to share personal medical information regarding Myelofibrosis, MF and similar neoplasms such as Essential Thrombocythemia, ET, and Polycythemia Vera, PV without this information being posted on our friends’ walls.
Myelofibrosis Later Stage Private Support Group and SCT Survivors – We are a group of caregivers, family members and patients suffering from Intermediate-2` or the later stages of Myelofibrosis. The group’s main focus will be on Treatments, Trials, Meds Therapies, SCT/BMT and symptom relief. We also welcome patients who have had an SCT, with discussion on any ongoing issues
ET & MF / CALR Mutation Patients Support Group – Private support group for patients worldwide, diagnosed with ET ( Essential Thrombocythemia ) or MF ( Myelofibrosis ) with a CALR gene mutation. Do not forget we are all individuals, we will react differently to drugs, treatments …. of course, people with PV ( Polycythemia Vera ) and with other MPN mutations are welcome to join the group.
Myelofibrosis Sharing, Caring and Support – This Page is dedicated to my father Daniel Sandro. I hope this is a page where people will “LIKE” the page and share their stories, experiences and helpful information that they have learned and maybe make a few friends in the process.
REGIONAL SUPPORT GROUPS
Florida MPN Support Group – This group is for Florida patients and their supportive friends to share experiences, knowledge, questions/answers and understanding.
MPN New England Support Group – The MPN New England Support Group is for patients and their supportive friends and relatives in the states of Maine, Vermont, New Hampshire, Massachusetts, Connecticut, and Rhode Island. We share our personal experiences and knowledge with an emphasis on local resources.
MPN Australian & New Zealand Support Community – Our community is here to share information and scientific advances, ask questions, establish bonds with each other and to combat the isolation that can come with having rare blood cancer.
Polycythemia Vera (PV) Support Group Philippines – Filipinos diagnosed with Polycythemia Vera (PV) and their family and friends.
Australian MPN Patient’s Forum – Australia’s first, and only MPN Forum has now finally arrived. MATES FORUM allows patients, their families, and friends to talk with and reassure each other concerning an MPN diagnosis. It should be remembered that we are ALL just MPN patients ourselves, and therefore, any more serious questions requiring a medically trained professional response will be referred to, (hopefully a growing pool of MPN specialist over time), for that is part of the very reason why this website has been created… to help provide answers!
GENERAL SUPPORT GROUPS
MPNforum – A Facebook group for The MPNForum. The MPNforum and its companion MPN Quarterly Journal are open source publications entirely managed and staffed by patients and caregivers with the volunteer participation of scientists, hematologists, and healthcare providers.
MPN Humor – In spite of our illnesses, we all have had experiences that make us laugh. We belong to other groups where we share information about our illness. This group’s ONLY purpose is to give us a laugh, to ease our pain. Laughter is the best medicine!
MPN Investigation & Discovery – This group was created for people to share information and articles related to current and/or future research, clinical trials, drug therapies, advancements, and any breakthroughs related to all MPNs. If a drug or new trial is working for you, please discuss it here and let others know about it. If your doctor told you about new and upcoming drug therapy, this would be the place to discuss it. Anything of interest that gets all of us closer to a cure should be posted here.
MPNs R US – This group is created for (MPN) patients to share knowledge and experiences without judgment.
If you would like to add a support group to this page that you run or are a member of, please send an email to communications@mpnrf.org.
