The IWMF sponsors a friendly Internet-based group discussion forum in English called IWMF Connect, where you can communicate with others, share experiences and insights, exchange information and get emotional support. The discussions typically focus on WM diagnosis, treatments, research, prognosis, side effects and related conditions. In addition, other important information is conveyed about patient advocacy, outreach to doctors, concerns of the newly diagnosed, information about IWMF’s research and educational activities.
To use IWMF Connect, you can either visit the discussion group page online or send an email message to the group. Once a message is posted or emailed, all IWMF Connect group members will be able to view your message and respond to it. There are typically 20-30 messages per day. NOTE: you CAN set up your subscription to the group so that you are either notified immediately each time a message is sent or notified on a less frequent basis. Instructions for doing so are provided via the link below at “How to Manage Your IWMF Connect Subscription.”
You can join IWMF Connect by going to https://groups.io/g/iwmfconnect(link is external) and clicking the “Sign Up” icon in the upper right hand corner.
Information for using IWMF Connect can be found in the following PDF guidelines:
- How to Manage Your IWMF Connect Account Settings
- How to Manage Your IWMF Connect Subscription
- How to Send a Message to IWMF Connect
- How to Use IWMF Connect Hashtags
- IWMF Connect Participation Rules and Etiquette
- IWMF Connect Participation Rules and Etiquette-3 Main Points
Any questions can be directed at the IWMF Home Office at [email protected]
IWMF members may also participate in the following Internet-based WM group discussion forums:
- Australia Facebook Group: (https://www.facebook.com/groups/WaldenstromsLF/)
- France Talk-List (http://portail.waldenstromfrance.org(link is external))
- Italy (WM_IT) Talk-List – (http://groups.google.com/group/wm_it(link is external))
- UK (WMUK) Talk-List ( https://groups.io/g/wmuk )
- WM Complementary and Alternative Medicine Online Forum (https://groups.yahoo.com/neo/groups/WMCaM/info(link is external))
- Rare Disease Connect WM Community (https://www.rareconnect.org/en/community/waldenstrom-macroglobulinemia/forum(link is external))
- Facebook “Waldenstrom Macroglobulinemia Support Group” (https://www.facebook.com/groups/wmsupportgroup)
- WMUK Private Facebook Group: Join the WMUK Facebook group