Three hundred and twenty registry participants had genetic confirmation of their FKRP‐related MD, of which 305 (95.3%; 168 female, 137 male) were diagnosed with LGMDR9 and 15 (4.9%; 9 female, 6 male), with another form of FKRP‐related MD. This evidence concerns the gene FKRP and Menkes disease.