It would be wonderful to be able to not only post to one another but to have face time together to share directly. Has anyone thought of this? Is it possible to set up a Zoom Support Group here? Just a thought.
I just went on the IMF app. I asked Myelo (IMF's AI support q&a chat) "Can myeloma patients worldwide connect through Zoom meetings? This was the response:
Yes, there are several ways for myeloma patients to connect through virtual meetings and Zoom platforms. The International Myeloma Foundation (IMF) facilitates numerous virtual support groups and online gatherings for patients and caregivers.
Virtual Support Groups Available:
• General Virtual Support Groups - Many IMF support groups now offer virtual meetings through Zoom, allowing patients to participate from home while maintaining privacy options like turning off cameras
• Specialty Virtual Groups including:
MM and Young Families support group for patients and caregivers with young children
Living Well with HRMM for high-risk multiple myeloma patients
Smoldering Multiple Myeloma support group
Las Voces de Mieloma for Spanish-speaking patients
Solo and Strong support group
• Regional Groups - Many local support groups across North America now offer hybrid or fully virtual meeting options
Benefits of Virtual Participation:
• Easy attendance from anywhere with internet access
• Privacy options - you can participate with camera off and just listen
• Access to experienced patients who want to help and share their knowledge
• Safe, comfortable environment for open discussions about hopes, fears, and treatment experiences
How to Get Connected:
For information about joining virtual support groups or starting one in your area, contact Robin Tuohy, IMF VP of Support Groups, at (Email address can only be seen by the question and answer creators) or call (Phone number can only be seen by the question and answer creators). The IMF maintains a network of more than 150 support groups and can help connect you with the right virtual meeting for your needs.
You can also visit myeloma.org for additional resources and support options, or contact the IMF Infoline at (Email address can only be seen by the question and answer creators) or 1-800-452-CURE (2873) for immediate assistance.
You might also want to know
What are the typical topics discussed in myeloma patient support group meetings?
Are there any specific organizations that regularly host virtual myeloma support groups?
Could there be a weekly or monthly Zoom meeting set up for members?
That's a wonderful idea! While the platform doesn't currently offer official Zoom meetings, connecting face-to-face with others who understand myeloma can be incredibly meaningful.
Here are some ways to make this happen:
- Reach out to members you've Show Full Answer
Debi,
I love the idea and would join. I have no idea how to do this though. Some people get together in their own area in person. I don’t have that here.
Paula🌹
Debi, I think this is a great idea and wondered about it myself. I see the site response to your inquiry is that it currently is not set up for that type of interaction and that such a platform would have to be established among members who want to interact via video conferencing. I would join such a group because I think it would offer immediacy and be a great tool for support and information exchange. Lyn