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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This endorsed Endo-ERN event is taking place 6-7 March, 2026 at Western Plus Tower Hotel, Via Lenin, 43| Bologna.
English programme Italian Programme
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Register now for a joint ERN-EYE X Endo-ERN webinar taking place at 17:30 (CET) on Friday 27 February, Blepharophimosis Syndrome (BPES): Integrating Genetic, Endocrinological Ocular, and Patient Perspectives.
Check out the full programme and speakers below:
Chair: Prof. Dr. Elfride De Baere, Ghent University Hospital, Belgium.
Genetic basis of BPES and implications for genetic counseling, Prof. Dr. Elfride De Baere, Ghent University Hospital, Belgium.
Ovarian development, fertility considerations, and hormonal follow-up, Prof. Sophie Christin-Maitre, Sorbonne University, Paris.
Overview of Surgical Approaches in Blepharophimosis-Ptosis,Epicanthus Inversus Syndrome (BPES), Dr. Christian Decock, Ghent AZ Maria Middelares, Belgium.
Lived experience [...]
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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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Cancer-therapy related endocrine toxicities are increasing with the increasing use of immune-modulating and targeted anti-cancer treatments. In this webinar we will discuss what an endocrinologist needs to know about these toxicities.
Featuring presentations from Dr. L. Chaker, endocrinologist, and Dr. D.W. Dumoulin, pulmonary oncologist both from Erasmus MC, the Netherlands. The session will be chaired by Edward Visser, MTG8 co-chair.
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Register now for the next ESE Talks…Sarcopenia in Rare Endocrine Disorders is planned for Tuesday, 3 March at 17:00-18:30 (CET).
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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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Find out about the application process and programme of the Rare Endocrine Disease Winter School, Varna, Bulgaria Saturday 28 Febuary – Tuesday, 3rd March, 2026. This RED Winter School will feature international speakers from Endo-ERN. A small group of a maximum of 30 participants will be treated to diverse sessions including lecturers, case presentations, roundtable discussions and plenty of time to interface with international experts.
Agenda topics will cover all Endo-ERN Main Thematic Groups (MTGs) providing a well rounded experience for those intersted in learning more about rare endocrine conditions.
Deadline for application is Monday, 12 [...]
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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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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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