Living with VWD
Discover a supportive space where patients connect, share their experiences, and access valuable health resources. At Ben’s Friends, our mission has always been to provide patients living with rare diseases or chronic illnesses, along with their caregivers, family, and friends, a safe and supportive place to connect with others who understand their journey.
Our work began in 2006 with the creation of AVMSurvivors.org. At that time, online support for rare disease patients was very limited. Over the years, Ben’s Friends grew into a global network that has supported tens of thousands of people around the world.
Today, the online support landscape has changed significantly. Patients can now connect through many online platforms and social media groups that did not exist when Ben’s Friends first began. In many ways, we believe our mission has been accomplished — helping create a world where rare disease patients can more easily find support and community.
After careful consideration, the Executive Board has made the difficult decision to close several online support communities, including the Life with Multiple Myeloma community, effective June 19, 2026.
If you have reached this page, it is because this community is in the process of being archived and retired. While active discussions will no longer continue, we are grateful for the friendships, support, and shared experiences this community has provided over the years.
Frequently Asked Questions
Find clear, helpful answers to your most common questions here
What happens to my data?
Your account information and community content will be handled according to our privacy and data retention policies. Selected public discussions may be preserved in an archived format, while private information and sensitive data will remain protected.
Will my posts still appear online?
No. Community discussions and member posts will no longer be publicly accessible once the community is closed. However, internal backups may be securely retained for administrative and archival purposes.
Can I request removal of my content?
Yes. Community members may contact modsupport@bensfriends.org regarding requests related to their account or publicly visible content.
Will private messages remain accessible?
No. Private messages will not be included in any public archive and will remain protected according to our privacy policies.
Where can I continue to find support?
You may still explore other communities and rare disease resources through Ben’s Friends and other trusted patient advocacy organizations.
When will the community officially close?
The Living with VWD community is scheduled to officially close on June 19, 2026. After this date, active discussions and member access will no longer be available, and the community will transition into an archived informational website.
Other Support Communities and Resources
Although this community is closing, there are still many online support groups and patient communities where individuals and families affected by multiple myeloma can continue to connect, share experiences, and find support. We encourage you to explore other trusted patient communities, advocacy organizations, and social media groups that continue to serve the rare disease community.