NEW: Publication from EuRREB Advancing Data Harmonisation and Research in Transgender Health
We are pleased to share the latest publication from the European Registries for Rare Endocrine and Bone Conditions (EuRREB):
The Gender Incongruence module in EuRREB – European Registries for Rare Endocrine and Bone Conditions: first results, current insights and future directions published in Endocrine Connections.
The EuRREB team has successfully developed and integrated a dedicated module for Gender Incongruence within existing European health registries.
This new module:
Standardises data collection across centres
Enhances comparability and interoperability
Supports [...]
COMPLETE: EURORDIS Rare Barometer Survey
The Rare Barometer programme gathers real experiences from people living with rare diseases across Europe, helping to turn those experiences into concrete data that can influence EU and national policies. Each new edition builds on the findings of previous surveys, showing where progress has been made — and where challenges remain.
The survey is open until 16 November 2025 and is available in more than 25 languages.Everyone affected by a rare endocrine condition — patients, parents, or carers — is encouraged to participate and share it within their community.
LISTEN: ERNs on Air
The latest episode of the ERNs on Air bonus podcast series shines a spotlight on a patient-led initiative addressing inequities in endocrine medicine provision across Europe.
In this episode, host Julien Poulain hands over to Nora Lázaro (EURORDIS, ERN & Healthcare Patient Engagement Manager) for a conversation with Johan de Graaf (patient representative and co-chair of the Endo-ERN ePAG) and Emily White (Project Manager, Endo-ERN Coordination Team).
Together, they discuss how data from three Europe-wide surveys has been used to map disparities in access to essential treatments and specialist care for rare [...]
In Memoriam – Prof. Juliane Léger (1954 – 2025)
It is with great sadness that we share the news of the passing of Prof. Juliane Léger on 27 September 2025, at the age of 71.
Prof. Léger was a distinguished pediatric endocrinologist-diabetologist at Hôpital Robert-Debré (AP-HP, Paris) and an important contributor to the foundation of Endo-ERN.
Throughout her career, she made outstanding contributions to the field of pediatric endocrinology, particularly in the areas of congenital hypothyroidism, growth disorders, and rare endocrine diseases. As coordinator of the French reference centre CRESCENDO, she played a leading role in advancing care, research, and collaboration for children with rare endocrine conditions.
Prof. [...]
Endo-ERN Training & Education Newsletter – October
COMPLETE: ERDERA survey
We kindly invite you to complete a short survey developed by ERDERA Work Package 25 – Task 4, which aims to gather insights into the current state of clinical research across the European Reference Networks (ERNs) and the involvement of ERN-affiliated Health Care Providers (HCPs) in the ERDERA project.
This survey supports the further development of the ERN Living Lab, an ERN research platform designed to foster cross-fertilization between researchers and clinical experts.
🔗 Survey link: https://forms.office.com/e/ZJYVAnA7mi
📄 Survey preview: You will find an example of the survey with all questions for [...]
REGISTER: International Conference on Clinical Research Networks for Rare Diseases
Reigster now for the 2nd International Conference on Clinical Research Networks for Rare Diseases, organised by IRDiRC, ERDERA, and Rare Diseases International. This event will take place 9–10 December 2025 in Heidelberg, Germany — with both in-person and virtual participation options.
Clinical Research Networks (CRNs) form the backbone of efficient and collaborative rare disease research. By linking sites, laboratories, patient organisations, funders, and regulators, they help overcome geographic fragmentation, pool limited patient populations, and harmonise data and protocols across borders.
This conference, titled Mobilising the Global Rare Disease Clinical Research Ecosystem [...]
REGISTER: JARDIN GA, Vilnius, Lithuania
We are pleased to inform you that registration is now open for the JARDIN General Assembly 2025. The annual meeting of the JARDIN will take place at the at the Vilnius Park Plaza Hotel (located at: M. K. Čiurlionio 84, LT-03100 Vilnius, Lithuania) and online from 7-10 October.
The JARDIN General Assembly is a crucial opportunity for JARDIN participants to review the progress of the JARDIN Work Packages, address questions about the project, discuss plans for future activities, meet and network.
If you wish to attend, please register via the [...]
REGISTRO: Aggiornamento in tema di ipopituitarismo (Update on hypopituitarism)
This event will be conducted in Italian.
Serie di Webinars SIE-SIEDP sulle malattie endocrine rare per specialisti italiani (Joint SIE-SIEDP webinars in rare endocrine diseases: a collaboration for Italian specialists)
Moderatori: M. Maghnie, L. Persani
Speakers: B. Cangiano (Endocrinologia, Milano; ipopituitarismo acquisito), D. Vitali (Associazione pazienti) Pediatra Tommaso Aversa Messina (focus su deficit di GH)
L’evento si terrà in italiano. Se non potete partecipare, registratevi comunque e riceverete una registrazione.
