Are you a Carrier?

HIBM is an autosomal recessive disorder, which means that the parents of someone affected by HIBM are carriers of the disease. Carriers are not affected by the disease, which means that their bodies function normally. But when two carriers have a child, there is a 25% chance with each pregnancy of having a child who actually has HIBM, there is a 50% chance that each child will be a carrier like his or her parents (and not have the disease), and there is a 25% chance that each child of the couple will not carry any mutation for the disease (meaning that he or she will not be a carrier nor will he or she have the disease).
Approximately 1 in 15 Iranian Jews are carriers of HIBM and 1 in 1000 Iranian Jewish have the disease. If you are of Iranian Jewish descent, we urge you to get tested so that you can easily avoid passing the disease to your children. It is possible to test at any time, but is particularly important prior to becoming pregnant or during early pregnancy. 
Testing is anonymous and can be performed with a painless cheek swab.

Clinical Trials

National Human Genome Research Institute (NHGRI) has completed Phase 1 of its clinical trial of ManNac. 


National Human Genome Research Institute (NHGRI) is recruiting patients for a Natural History Study of patients with HIBM. MORE INFO

Hereditary Inclusion Body Myopathy-Disease Monitoring (HIBM-DMP): A Combined Registry and Prospective Observational Natural History Study to Assess HIBM Disease. MORE INFO

Results from Ultragenyx Pharmaceutical’s Phase 1 study of UX001. MORE INFO
NDF Executive Director Carolyn Yashari Becher appointed to HIBM Steering Committee as part of HIBM Patient Monitoring Program to facilitate integration of patient registry and natural history information. MORE INFO

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