Hemophilia B Connected (for Peers, Families and Experts)
Hemophilia B Connected is an online discussion board where patients, caretakers, and their loved ones have the opportunity to ask questions, share experiences, and connect with one another on a wide range of peer support issues: Advocacy, Psychosocial issues (depression, pain management, unaffected siblings), Physical Therapy, Nutrition & Exercise, Inhibitors, New Family Support, Aging with Hemophilia, and much more! Users can customize and control the content they receive notifications for.
"Ask the Experts" Digital Channel
B Connected's Ask the Experts Channel allows experts from the hemophilia B community to digitally “host” discussion sessions with participants. A Physical Therapist may answer questions about how being in shape helps cut down on joint bleeds, or representatives from grassroots nonprofit organizations may field questions about changes to legislation they are working on, or a Pharmaceutical company may address questions about its pipeline.
During an Ask the Expert session, the admin will closely monitor the type of questions being asked to ensure discussions do not go off-topic. Any questions or posts deemed inappropriate will be removed by the admin and the poster will be direct-messaged with an explanation of why the post was removed.
Information from these sessions will be available to the Hemophilia B Connected Community for up to one week for subscribers to review should they miss the live session.
Hemophilia B Connected utilizes Slack, a discussion app that many businesses and communities rely on for their communication needs. This communication platform will provide critical insight about users, activity levels, peak hours, and engagement to better target when to host Ask the Experts sessions. Slack is HIPAA compliant.
JOIN B Connected on SLACK
To request access to Hemophilia B Connected, contact administrators Rick Starks and Shad Tulledge at: firstname.lastname@example.org.
To sponsor a B Connected "Ask the Expert" session, contact Kim Phelan: email@example.com.