The FIRENDO (Filiere Maladies Rares Endocriniennes) network will award a grant for the period 2025-2027 to fund a collaborative research project between a FIRENDO member organization and an HCP (Health Care Provider, a healthcare institution) that is a member of the Endo-ERN (European Reference Network on Rare Endocrine Conditions) outside France.
The grant aims to stimulate international collaborative clinical, translational, or fundamental research projects between:
A FIRENDO organization (clinical or research laboratory, clinical department, patient association) – see the directory here, and an Endo-ERN member outside France – see the directory here. The project must focus [...]
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Endo-ERN will have participate in several aspects of the at the Joint Congress of European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) thanks to our partnership with these organisations.
Endo-ERN will host a booth 44&45 with Endo-ERN ePAGs and our colleagues from EuRREB – stop by and find out more about Endo-ERN’s activities. Our colleagues also prepared posters that are worth a view:
Creating Patient Journeys within Endo-ERN European patient advocacy group (Endo-ERN) The European Registries for Rare Endocrine and Bone Conditions (EuRREB): Collecting Core Data Elements and Clinician and Patient-Reported Outcomes The European Registries [...]Continue reading →
Register now for this joint webinar with ESE, Endo-ERN, and ESPE planned for 4 November, 2025 at 1700-1830 CET.
ESE Talks – Recent therapeutic perspectives for rare endocrine diseases (multiple examples)
Chair: Elena Calassi (Spain)
Long-acting rhGH: is it an improvement over daily rhGH?
Mohamad Maghnie (Italy)
Palopegteriparatide: new perspectives for hypoparathyroid patients
Lars Rejnmark (Denmark)
Novel therapies in acromegaly
Sabrina Chiloiro (Italy)
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Register now for a joint webinar with ESE, Endo-ERN and ESPE 2 September, 2025 at 1700-1830 CEST.
CAH: diagnostic and therpeutic challenges across the entire lifespan
Chair: Alberto Pereira (Netherlands)
Diagnostic and managment challenges (focus on transition)
Hedi Claahsen van der Grinten (Netherlands)
Novel therapeutic perspectives
Henrik Falhammar (Sweden)
Management of CAH in males (clinical case)
Riccardo Pofi (UK)
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Congenital combined pituitary hormone deficiency (CCPHD) is a rare and heterogeneous disease entity, usually defined as at least two pituitary hormone deficiencies with onset in childhood, without known aquired causes. Variability includes causative gene mutations, clinical onset, hormonal deficiencies, cerebral imaging, neurological impairment and syndromal manifestations. In this webinar, European centers will report on their paediatric and adult cohort data followed by an open discussion led by experts in the field. Agenda
Welcome, Nienke Biermasz, Leiden, NL
Introduction, Henrik Christesen, Odense, DK, 5 min
Genotype-phenotype correlations in CCPHD. Mehul Dattani, London. UK, 10 min
The Finnish paediatric cohort. Taneli Raivio, [...]
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Our colleagues in EuRREB have recently published their Core Registry and e-REC Annual Reports which showcase significant growth in partipation and data collection. Over the past years, the introduction of condition-specific modules has been a key driver of engagement and improving insights into rare conditions.
Core Registry highlights:
Growing participation 51 active centres are now contributing data to the Core Registry 35 centres within ERNs & 16 centers outside ERNs 3980 cases entered since October 2018 by 87 users Advancing Research and Patient Care 11 Condition-specific modules developed across 6 MTGs increasing reporting [...]
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The European Society of Endocrinology (ESE) has launced a new educational programme aimed to address the unmet needs of the calcium, phosphate and bone community – ESE Rare Calcium Phosphate and Bone disorders (ESE Rare – CaPaB). Details about the ESE Rare-CapaB programme can be found on the ESE website.
The first stage of this Educational Programme is an online survey, which has been created by an expert panel and includes five questions (one per condition) with a proposed set of clinical, diagnostic and therapeutical unmet needs.
The aim of this survey is to [...]
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The key findings from the latest EURORDIS Rare Barometer survey revealing widespread barriers faced by the 30 million people living with rare diseases in Europe in their daily lives.
There were several key insights related to rare endocrine conditions:
8/10 people with rare endocrine diseases live with disabilities 62% had difficulties with at least 2 activities – seeing, hearing, walking/climbing stairs, remember/concentrating, selfcare, communication 36% found it difficult or very difficult to obtain publicly funded support 48% experienced discrimination related to the rare disease or disability 23% of people with rare endocrine diseases are unemployed
Download key findings of [...]
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