NEW: Publication from EuRREB Advancing Data Harmonisation and Research in Transgender Health

EuRREB

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.

What the study achieved

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 [...]

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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.

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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 [...]

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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. [...]

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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 [...]

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ASK: Support from the CPMS Helpdesk

The CPMS Helpdesk is a resource to support all CPMS users with any technical issues that they have using the CPMS 2.0 system or app, ensuring clinicians are able to participate in virtual consultations. You can now even schedule a 1/1 session to receive personalized support.

Greta Ginski is the CPMS Helpdesk Manager and has been troubleshooting issues from Lubeck since June of 2024. She took the time to share her experiences and offer helpful tips for new CPMS users. She took the time to share her experiences and offer helpful tips for new CPMS users.

FAQ

The most [...]

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APPLY: ERDERA Networking Support Scheme (NSS) funding call

The European Rare Diseases Research Alliance (ERDERA) has a call for the Networking Support Scheme (NSS). The deadline for this round of funding is open until early October. The aim of the NSS is to bring rare disease and the rare cancer community together across borders, disciplines and sectors.

This call will be open until April 2029 with applications being reviewed on a six-monthly basis.

To be eligible, applicants must plan a networking event with a clear rare disease or rare cancer research focus and address both aims of the call: promoting knowledge exchange and supporting greater inclusion of underrepresented [...]

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NEW ePAG: Laura Maag from Surrénales

We are pleased to welcome Laura Maag as a new patient representative for the French association Surrénales. A dedicated member of the organization for over 16 years, Laura brings a wealth of experience and insight into adrenal conditions. She has actively contributed to key initiatives such as the European Emergency Card project and is deeply committed to advocating for patients’ needs. Her expertise and passion make her a valuable addition to the Endo-ERN community as we work together to improve quality of life for those living with rare endocrine conditions.

Welcome Laura!

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COMPLETE: Short survey to assess treatment of (older) adults with XLH.

Cristina Eller-Vainicher and Giovanna Mantovani at member institution Fondazione Cà Granda IRCCS Ospedale Maggiore Policlinico, Milan, Italy are currently conducting an international survey to investigate current practices, access disparaties, and regulatory differences regarding Burosumab treatment in X-linked hypophosphatemia (XLH) with particular focus on:

Challenges in the transition phase from paediatric to adult care Access and treatment continuity for patients over the age of 65

This initiative is especially relevant as, in Italy, adult access to Burosumab is limited: after the age of 18, treatment is reimbursed in the presence of an active fracture or pseudofracture only, and, after the age [...]

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NEW ePAG: ePAG Marc Büdenbender – Endo-ERN

We are pleased to welcome new ePAG Marc Büdenbender to Endo-ERN and MTG1.

Marc joined the board of Let’s Cure ACC after surviving stage IV adrenocortical carcinoma, driven by a strong desire to support others coping with this very rare and life-threatening disease. Becoming a member of the ePAG within Endo-ERN allows him to take that commitment to the next level — by working collaboratively with other patient representatives and medical experts in the field of rare adrenal disorders to improve patient care across Europe, equally and consistently, from diagnosis through [...]

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