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 one in 20 Iranian Jews are carriers of HIBM and one in 400 Persian Jewish couples are at risk of having a child with 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) is recruiting patients for Phase 1 of its clinical trial of ManNAc.
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National Human Genome Research Institute (NHGRI) is recruiting patients for a Natural History Study of patients with HIBM.
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News

Results from Ultragenyx Pharmaceutical’s Phase 1 study of UX001.
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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.
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