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.
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 to 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 1125 ET, PV, and MF patientsrepresenting 46+ countries. Here you'll find others that remember all too well what it was like to havemore 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 has 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.
Facebook Support Groups:
Polycythemia Vera Support- ThisFacebook 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 to know 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.
Myelofibrosis Support - The purpose of this Facebook group for Myelofibrosis patients is to offer support as these diseases are very complex and rare.
Women with Essential Thrombocythemia-Private group for women living with ET on Facebook. Given the rairity 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!
MPN Blood Sisters & Brothers - This is a support group for people with a Myeloproliferative Neoplasm (Essential Thrombocythemia ET, Polycythemia Vera PV, or Myelofibrosis MF) and their caregivers.
Florida MPN Support Group - This group is for Florida patients and their support 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 support 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.
MPNforum - 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.
If you would like to add a support group to this page that you run or are a member of, please email Lexi Moore at firstname.lastname@example.org.