
Let's talk more about inclusion body myositis
Share your real-life experiences living with, or caring for someone with inclusion body myositis. You can help others better understand our rare disease and how it impacts our lives. Share experiences as written articles, short videos, or photos.
Your experiences will also help gain more interest in IBM from the research community. Become a contributing author for #MyositisLIFE, a public community-based website, and start making your voice heard.
IBM Patient Opportunities
Learn more about empowering inclusion body myositis patient opportunities including clinical trials, research, and other opportunities available through partnerships we continue to build.
Allstripes IBM Program
Learn more about research for IBM
Make a difference by contributing to research with your existing medical records by enrolling in the Allstripes Inclusion Body Myositis program. Learn more.
Yale IBM Patient Registry
Join the registry and use free tools
Join the inclusion body myositis patient registry at Yale and start using your free IBM Personalized Index Calculator, which makes use of the IBM Functional Rating Scale (IBMFRS).
Arimoclomol clinical trial update
Watch our video update with Dr. Dimachkie
Watch our video with Dr. Mazen Dimachkie to learn more about the Phase 2/3 clinical trial of arimoclomol for sporadic inclusion body myositis by Orphazyme A/S, a sponsor of MSU.
Donate plasma for medical research
This is a paid opportunity for myositis patients
You could earn up to $200 per donation of plasma. This is not whole blood donation. This is plasma used for medical research such as discovering new autoantibodies and for making diagnostic test kits for myositis autoantibodies.
IBM and Dysphagia
Educate your doctor about IBM dysphagia
Complications from dysphagia is one of the leading causes of death in inclusion body myositis; often choking or aspiration pneumonia. This summary provides an overview and link to extensive research you should share with your doctor.
IBM Community and Support
Finding a support group where you feel comfortable is important. It can often feel you alone living with this diseseae.
You are NOT alone. We provide various support options. Join us today and get the support you deserve.
Monthly IBM patient video support
Last Friday of the month, 5 PM ET
Join fellow inclusion body myositis patients for our live monthly IBM Patient Video Support sessions. Meet others face-to-face to share, ask questions, and make lasting friendships. IBM session is held on the last Friday of the month at 5 PM Eastern Time.
Myositis Support Community
Join for free 24/7 anonymous support
Join the official Myositis Support Community, a partnership with Inspire. Get educational, emotional, and general support, along with the expriences members share to help support you through the various phases of mobilty loss. You control privacy. Available globally, 24/7.
Write publicly about your IBM life
Share your patient and caregiver experiences
Share topic-based experiences of your life with inclusion body myositis. For patients and caregivers, we need to talk about IBM more, and publicly. No writing experience is necessary to be a contributing author; we will work with you to edit. Your voice needs to be heard. Start today.
Connect with other IBM patients
We encourage inclusion body myositis patients and caregivers to join us for free private online community support and education. We offer various support options. Popular topics in our support communities for IBM include adaptations, mobility and assistive devices, emotional and mental health, relationship challenges, and research. Join us today!