Online MPN Patient Support Groups
Online MPN 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.
MPD Chat- MPD Chat is a Gmail group where cyber-friends connected by MPDs, can share troubles, swap information and share their stories. Posts are generally relevant to MPN’s. MPN-Net This is the URL- Update url-http://mpninfo.org/mpn-net-an-online-support group)
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).
Facebook MPNforum-This is a Facebook group . 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.
Facebook Myelofibrosis Support -This is a Facebook group for Myelofibrosis patients.
Facebook Women with Essential Thrombocythemia-Private group for women living with ET on Facebook. Must request to be added before you can see the page.
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.
Do you see that a group is missing? Email Raquel at firstname.lastname@example.org with updates and questions.