Thank you for visiting the International GNE myopathy Online Patient Registry,
The registry website is currently unavailable whilst we implement vital updates - apologies for any inconvenience this may cause. If you are an existing participant in the registry and would like to speak to a member of the curation team, please contact us by email: HIBM@treat-nmd.eu or by telephone +44191 241 8605.
If you are not currently a participant in the registry and would like further information about taking part, please email HIBM@treat-nmd.eu with your contact information and we will notify you once the registry is back online. For all other enquiries, please email HIBM@treat-nmd.eu and a member of the curation team will get back to you as soon as possible. To learn more about GNE myopathy and the study itself, an archive of study newsletters are available on the TREAT-NMD website in multiple languages (http://www.treat-nmd.eu/gne/patient-registries/international-registry/newsletters/).
The International GNE myopathy Online Patient Registry Team