TELL US: Are you attending the ECE this May?

Are you attending the European Congress of Endocrinology (ECE) taking place in Prague 9-12 May, 2026?

If so please let us know if you are presenting or would like to attend the Endo-ERN dinner which is currently planned Sunday, 10 May by completing the survey below. The dinner (details TBD) will be on your own costs and will a great opportunity to meet colleagues in the network.

HCP members survey

ePAG survey

Find out more about the symposium that will take place Tuesday, 12 May 11:20-12:50.

If you are presenting don’t forget [...]

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DISCOVERY: Rare diseases are part of the human story: from prehistory to over 30 million Europeans today

More than 30 million people in Europe live with a rare disease today. Although rare diseases are often perceived as modern medical challenges, scientific research now confirms that they have affected humans for thousands of years.

This long history is illustrated by a recent study published in The New England Journal of Medicine, co-authored by Adrian F. Daly, Internist-Endocrinologist and Researcher at the CHU de Liège, Liège University, Belgium and Endo-ERN expert. The study reports the genetic diagnosis of a rare disease affecting growth in a family who lived more than 12,000 years ago, using advanced ancient [...]

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SURVEY: Patient survey on transition of care

Endo-ERN invites patients and families to take part in a new survey on transition of care, aimed at better understanding how young people with rare diseases experience the move between paediatric and adult healthcare services.

Transition is a critical period that can strongly influence long-term health outcomes and patient wellbeing. Through this survey, the Overarching ERN Transition Working Group seeks to capture real-life experiences from across Europe, ensuring that future improvements to transition pathways are informed directly by those who live through them.

About the survey

Available in 10 EU languages

 [...]

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APPLY: Data, Ethics and AI training

Applications are now open for the 2026 Data, Ethics and AI training developed by EURORDIS and ERDERA, offering high-quality training for rare disease patient advocates and early-career researchers (PhD candidates and up to two years post-PhD).

This training has been developed in response to the growing need for advocates and researchers to understand and navigate the complexities of data management, ethical considerations, and the role of AI in rare disease research across Europe.

The online part of the training will run from March to July 2026, followed by the in-person sessions on 14–15 September 2026 in Barcelona.

 [...]

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In Memoriam: Jette Kristensen

Endo-ERN is deeply saddened to share the news of the passing of Jette Kristensen, a founding ePAG of Endo-ERN and long-standing board member and former chair of the Danish patient organisation Addison Foreningen Danmark.

Jette was a central figure in establishing patient representation within Endo-ERN. She helped ensure that the patient voice was embedded in the network from its very beginning and remained at the heart of collaboration, care, and decision-making in rare endocrine diseases.

Alongside her European work, Jette devoted nearly two decades to leadership within Addison Foreningen Danmark, serving with exceptional commitment. Through her [...]

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GUIDELINE: Multiple Endocrine Neoplasia type 1 (MEN1)

As the year draws to a close, it is a great moment to look back on a set of clinical recommendations and best-practice guidelines, published earlier this year, that provide an important update on the diagnosis, management, and long-term care of Multiple Endocrine Neoplasia type 1 (MEN1). These guidelines bring together the latest evidence and expert consensus to support more consistent, high-quality care across centres.

The document emphasises that MEN1 is a complex, multi-tumour condition, and although genomic sequencing has improved the detection of MEN1 pathogenic variants, early clinical recognition remains [...]

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SUCCESS: Endo-ERN Shows Strong Performance in First ERN Monitoring Report

The European Commission has published the first-ever Continuous Monitoring Report for the European Reference Networks (ERNs), covering the 2023–2024 reporting period. This milestone report compiles data from more than 1,600 clinical units across 375 hospitals in 27 EU Member States and Norway, offering the most comprehensive overview yet of ERN activity and impact since their launch in 2017.

The report presents detailed indicators across the ERN system’s seven core areas — clinical activity, cross-border collaboration (CPMS), registries, training, guidelines, dissemination and coordination — providing a clear picture of how ERNs support patients with rare diseases across Europe. It highlights a [...]

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NOW OPEN: Call for Poster Abstracts – ECRD 2026

The 13th European Conference on Rare Diseases & Orphan Products (ECRD 2026) will take place 3–4 June 2026, in person in Prague and online. Organised by EURORDIS-Rare Diseases Europe, co-organised by Orphanet, and supported by AFM-Téléthon, ECRD is Europe’s largest, patient-led, policy-shaping event for the rare disease community. The 2026 edition, titled Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases, will mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases.

Poster abstract submissions for [...]

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NOW OPEN: ERDERA Pre-Announces 2026 Call

The European Rare Disease Research Alliance (ERDERA) has pre-announced its upcoming 2026 Joint Transnational Call (JTC):


Launching on 10 December 2025, this initiative will fund multinational research collaborations aimed at improving diagnostic clarity for patients whose rare diseases remain unsolved. An information webinar for potential applicants will take place on 16 December 2025, 15:00–17:00 CET.

The call will welcome proposals under the theme:

Resolving unsolved cases in rare genetic and non-genetic diseases through variant validation and new technological approaches

Access the pre‑announcement

An informational [...]

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ENGAGE: Rare Diseases and ERNs Must Remain Visible in the EU’s Future Budget

The European Commission has opened a consultation on the draft Multiannual Financial Framework (MFF) — the EU’s long-term budget plan.
In the current proposal, rare diseases are not explicitly mentioned, and the EU4Health programme no longer appears as a standalone initiative.

European Reference Networks (ERNs) — established by the European Commission in 2017 — have become a cornerstone of the EU’s strategy to improve diagnosis, treatment, and care for people living with rare and complex conditions by connecting healthcare providers and specialists across Member States. The omission of ERNs and rare [...]

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