NEW: Endocrine Connections Special Collection II

Endocrine Connections has launched its second special collection in collaboration with Endo-ERN, focusing on Rare Diseases & Transition in Care.

The open-access series explores topics such as patient transition, genetic testing, virtual consultations, and innovative tools to improve outcomes.
The first paper, by H. L. Claahsen-van der Grinten et al., Enhancing Transition Care for Adolescents and Young Adults with Adrenal Insufficiency in the Netherlands: A Holistic Model for Improved Patient Outcomes, is now published — offering a practical framework to strengthen continuity of care.

NEW: Publications from EuRREB

Three new EuRREB-led papers mark significant progress in standardising data collection across rare endocrine and bone conditions. EuRREB — the shared registry infrastructure for Endo-ERN and ERN BOND — enables structured, cross-border data collection that connects clinical practice with research.

Gender Incongruence Module: A new registry framework to harmonise data and strengthen research collaboration in transgender health, improving evidence-based care across Europe.

Melorheostosis Dataset: A standardised 44-item dataset implemented in the EuRREB Core Registry, supporting research and care for this ultra-rare bone disorder.

FD/MAS Dataset: Development of the first international data collection module for Fibrous Dysplasia/McCune-Albright Syndrome, enabling harmonised reporting and deeper insight into disease progression.

APPLY: Clinical Exchange Programme

The Endo-ERN Clinical Exchange Programme is now open! We encourage you to share this opportunity within your team and inspire colleagues to apply. The programme offers rich opportunities to gain experience, share expertise, and strengthen collaboration across the network.

Several centres have already prepared exchange plans — check out the host page for ideas — but remember that exchanges are possible between any Endo-ERN members. The call for applications is open 1 October – 30 November, 2025.

If you are interested in hosting please email the Project Office.

VIEW: ERICA videos

Now available on the Endo-ERN YouTube channel: the ERICA recorded webinars — expert-led sessions packed with resources, tools, and ideas to support researchers working in rare diseases.
Explore the series to strengthen your projects and connect with the wider ERN research community — and subscribe to stay up to date as new content is added.

SUCCESS: EuRREB 2025 Symposium

The EuRREB community came together for a very successful Registries Symposium last month. With more than 130 participants from 28 countries, the event fostered knowledge exchange, discussions on challenges and exploration of new opportunities – all with the shared goal of advancing research and impoving the patient care in rare endorcine and bone conditions. Check out the presentations and recording.

HELLO: European Rare Diseases Research Alliance (ERDERA)

The European Rare Diseases Research Alliance (ERDERA) unites over 170 organisations across 37 countries to streamline and accelerate research on rare diseases in Europe. It integrates funding, clinical networks, data services, and training to transform diagnosis, treatment development, and innovation.
For ERNs ERDERA offers a powerful partner: better coordination, shared infrastructures, and new opportunities to align efforts and translate discoveries into patient impact. Find out more about the ERDERA Networking Support Scheme (NSS) funding call.