The EURO-NMD Registry paper has just been published on the Orphanet Journal of Rare Diseases. As it is open access you can read it here: click to open in another tab We leave below a Q&A teaser about what is discussed inside the paper. Why EURO-NMD …

Registry Onboarding has started The ERN EURO-NMD Registry Hub intends to collect data from the patients seen by the HCPs participating in the network. Read the registry information letter here: click to open in a new tab Download the the Data Sharing A …

Patient centered and interoperable registry hub for Rare Neuromuscular Diseases A recognised challenge for rare diseases is the heterogeneity of legacy data sets and the multiplicity of existing registries. EURO- NMD health care providers and patient o …

Launch of the First  European Registry for all Rare Neuromuscular Diseases. The onboarding process of EURO-NMD Healthcare Providers can now start! Today, in a significant step forward for the neuromuscular disease community, the European Reference Netw …

TitleFirst name*Last name*SuffixJob title*Identify the role(s) you take on as representative of your HCP in EURO-NMD, if any. Tick all that apply. In case of doubt, leave unchecked and contact the Coordination: we will assist you gladly. Thanks.UNIT – …