All news items of Aimee Casey
Congratulations to Johan de Graaf and Petra Bruegmann for their recent win of the Eurordis 2025 Patient Partnership Good Practice Challenge! The aim of this [...]
Endo-ERN ePAG, Nathalie Ferard represents Association GRANDIR and has kindly provided an update newsletter on the many activities and resources available from the organisation. Activities/resources [...]
#outlook a { padding: 0; } body { width: 100%!important; -webkit-text-size-adjust: 100%; -ms-text-size-adjust: 100%; margin: 0!important; padding: 0!important; } .ExternalClass { width: 100%; } .ExternalClass, [...]
To mark Rare Disease Day, the European Commission published several resources celebrating the dedication and expertise of the European Reference Networks that make a tangible [...]
NEW: Clinical Practice Recommendations for the Diagnosis and Treatment of X-linked hypophosphataemia
New evidence-based guidelines were recently published. Topics covered include: Diagnosis of XLH Initial evaluation of the presence and severity of complications of |X-linked hypophosphaeaemia Definitions [...]
#outlook a { padding: 0; } body { width: 100%!important; -webkit-text-size-adjust: 100%; -ms-text-size-adjust: 100%; margin: 0!important; padding: 0!important; } .ExternalClass { width: 100%; } .ExternalClass, [...]
This opportunity is open to a wide range of developers, including academics, individual researchers, startups, industry stakeholders, organisations from diverse settings, and patient-led initiatives. Support [...]
#outlook a { padding: 0; } body { width: 100%!important; -webkit-text-size-adjust: 100%; -ms-text-size-adjust: 100%; margin: 0!important; padding: 0!important; } .ExternalClass { width: 100%; } .ExternalClass, [...]
The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European Reference Networks. Registration is now [...]
The Endo-ERN Transition of Care Working Group, invites you to complete this survey. The survey aims to gather valuable insights into the current practices, challenges, [...]
