The IWMF’s new online community, IWMF Connect, enables participants to connect with each other via either email or an online discussion board format. IWMF-Talk, the existing email discussion list, is being replaced by IWMF Connect, and its members have been moved automatically to the new platform.
IWMF Connect is a friendly internet-based group discussion forum, where you can communicate with others, share experiences and insights, exchange information and get emotional support. 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 the IWMF’s research, and educational activities.
Over the past year, a team of patients and caregivers worked diligently to define needs and select among various options to address those needs. The resulting platform choice, groups.io, is utilized by many other organizations, including IBM and a CLL/SLL patient organization (where Dr. Richard Furman is a regular contributor). These organizations deemed groups.io to be the option that best meets the need for people to participate via email OR via the online discussion forum.
IWMF Connect will provide participants the ability to communicate in pre-defined subject areas, called “hashtags”. Members will be able to view/read all postings that are made in each subject area. (To see the complete list of hashtags, go to: get-support/iwmf-connect-and-online-discussion-forums.) IWMF Connect also will provide participants, if they choose to do so, with the ability to share personal bios and use avatars or use photos to represent themselves, all in a safe, secure online environment.
Additional instructions and guidelines for using IWMF Connect can be found on the IWMF website and at IWMF Connect in the Files area (located in the left-hand vertical menu once you log in).
If you are not already a member, why not join us? To join, just go to https://groups.io/g/iwmfconnect and click “Sign Up” (located in the upper right corner). Note: If the system tells you that you’re already registered, then try again by clicking on “Log In” (also located in the upper right corner).
If you have questions or need assistance, contact the IWMF Connect Manager, Pete DeNardis, at firstname.lastname@example.org.