Inclusion Body Myositis Links

Myositis Organizations

The Myositis Association https://www.myositis.org/
TMA is a tax-exempt nonprofit organization which represents all types of myositis, including inclusion body myositis, polymyositis, dermatomyositis, juvenile myositis, and orbital myositis. TMA sponsors an excellent yearly national conference for myositis patients and caregivers. Regional KIT (Keep in Touch) support groups help connect patients, often with in-person local meetings. TMA is also involved in myositis education and research funding.

Myositis Support and Understanding https://understandingmyositis.org/
MSU is a tax-exempt nonprofit organization that provides online support groups on Facebook, myositis education, and financial assistance for myositis patients. The inclusion body myositis support group is restricted to IBM patients and caregivers, so you can discuss your disease in a protected setting. Because it is a “Closed Group”, “your personal Facebook friends, other than those who belong to the group, will not see that you have joined the group, posted, commented or liked something.” A separate closed group is available to family and friends of those with myositis.

Myositis Canada https://www.myositis.ca/
Myositis Canada improves the lives of people with myositis through education, support, and research funding. This is a fairly new and promising organization.

Myositis UK https://www.myositis.org.uk/
Myositis UK provides information and support, and promotes research, for inclusion body myositis, polymyositis, dermatomyositis, and juvenile myositis.

Myositis Association Australia https://myositis.org.au/
Myositis Association Australia promotes “support, connections, and keeping in touch” for people with myositis.

German Myositis Diagnostic Group — Diagnosegruppe Myositis (Deutsche Gesselschaft für Muskelkranke e. V.) https://www.dgm.org/diagnosegruppe/myositis
Diagnosegruppe Myositis is a German support group for people with myositis.

Muscle Disease (Muscular Dystrophy) Associations

The Muscular Dystrophy Association https://www.mda.org/
MDA provides services not only for muscular dystrophy, but also for numerous neuromuscular diseases, including inclusion body myositis. IBM patients can register with MDA to be eligible for these services. Over 150 MDA Care Centers, located across the US, offer specialized medical care for neuromuscular diseases. For many IBM patients an MDA Care Center is their best option for knowledgeable IBM medical care. The Muscular Dystrophy Association can assist with your equipment needs through their referral program.

Muscular Dystrophy Canada https://muscle.ca/
Muscular Dystrophy Canada supports people with neuromuscular disorders, including IBM.

Muscular Dystrophy Foundation – Australia https://mdaustralia.org.au/
MDF Australia provides services for neuromuscular diseases in Australia.

Muscular Dystrophy Association of New Zealand https://www.mda.org.nz/
MDANZ supports over 60 neuromuscular conditions, including inclusion body myositis.

Rare Disease Organizations

NORD – National Organization for Rare Diseases https://rarediseases.org/about-us/
Join the Rare Action Network and become an advocate for rare diseases!

Global Genes https://globalgenes.org/
Global Genes is a leading rare disease organization, with numerous resources for the rare disease advocate.

Clinical Trials Website

ClinicalTrials.gov https://clinicaltrials.gov/
This US government website is the place to go for clinical trial information.

Inclusion Body Myositis Patient Registries

The Inclusion Body Disease Registry at Yale https://ysph.yale.edu/ibmregistry/
The Yale Registry houses a number of resources aimed at helping and supporting all involved with IBM. Use the Personalized Index Calculator to calculate a mobility index score based on your medical history and physical ability, and compare your experience with IBM to those reported by patients on a nationwide survey conducted by the Registry team. Add your name to the Registry database to stay up-to-date with the latest happenings and to connect with the larger IBM community.

Germany Inclusion Body Myositis Registry — Treat-NMD Neuromuscular Network https://www.ibm-registry.org/de/
This registry is for people living in Germany who have inclusion body myositis. The registry allows researchers to collect data about the disease, and patients receive information about clinical studies and research.

A Special Inclusion Body Myositis Educational Website

Bill Tillier’s Inclusion Body Myositis website http://www.ibmmyositis.com/
This website provides extensive information about IBM. Highly recommended.

Inclusion Body Myositis YouTube Video Channel

IB Myositis https://www.youtube.com/channel/UCUFM7TISKkuSedQyQR_ls-A/videos

Jerry King, a man diagnosed with IBM in 2007, produces educational videos about the disease based on his personal experiences and research.

Inclusion Body Myositis Patient Blogs and Websites

Martin Jarry: Courir contra la temps https://martinjarry.com/
Martin Jarry is a Quebec man who has inclusion body myositis. He is an inspiring leader who has done much to increase awareness of myositis and raise funds for the disease. His website discusses his experiences and activities, in hopes of supporting and energizing others with myositis. The website is in both French and English. “En créant ce site web, je vise à informer et à soutenir, par le biais de diverses activités et partages d’expériences, les gens aux prises avec la myosite.” Myosite à inclusions.

Myo-Musings http://myomusings.com/
Dagmar Slaven, now deceased, described her experiences and insights with IBM from 2008-2015.

Papa’s Blog http://papamarshall.blogspot.com/p/ibm-inclusion-body-miositis.html
Jim Marshall discusses his experiences with inclusion body myositis.

Medical Literature Search Engines

PubMed https://www.ncbi.nlm.nih.gov/pubmed/
Search site for technical medical articles. Abstracts (summaries) are available for most articles, sometimes with free links to full-text articles. Many other full-text articles are only available for a fee from the publisher’s website. PubMed Central https://www.ncbi.nlm.nih.gov/pmc/ is similar but only includes full-text articles.

Google Scholar https://scholar.google.com/
Search engine for academic literature. Sometimes you can find free full-text articles that aren’t accessible on PubMed; look for [PDF] or [HTML] to the right of the article title, and click to access the full-text.

Semantic Scholar https://www.semanticscholar.org/
Search engine for academic literature. Search results can be filtered to include only articles for which a full-text PDF is available (Click “Has PDF”).

by Kevin Dooley, MD

Revised July 5, 2023