All news items of Aimee Casey
The 7th edition of the TALENT (Transition Adolescence and young aduLts – Endocrine diseases managemenT) conference took place on February 11-12, 2025, at the “Roma [...]
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 [...]
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 [...]
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 [...]
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, [...]
The European Rare Diseases Research Alliance (ERDERA) Joint Transnational Call (JTC) for Proposals 2025 is now open! Submissions are invited from research teams from across [...]
Our ever busy ePAG Nathalie Ferard of Association Grandir was kind enough to share an update on Camp Grandir a unique retreat that is organised [...]
