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 endcrine 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)
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)
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, [...]
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 [...]
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 [...]
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 unemployedDownload key findings of [...]
Endo-ERN would like to welcome our newest ePAG Marta Baranska.
Marta is the founder and representative of the non-profit organization The Pituitary Gland Association Poland (Szczecin, Poland), which supports patients with pituitary gland disorders and their families.
Marta is living with Cushing’s Disease but balances taking care of her health with a busy and diverse career. Marta shares more, “I have built a strong career as a lecturer at the Maritime University, a sailing ship captain, and an expert at the International Maritime Organization in London. Additionally, I am a certified Cognitive Soul, Life & Business Coach.
Beyond [...]
A public consultation is now open seeking information from a range of #rare disease stakeholders. This information will be utilized by the Committee on Public Health (SANT) to bring a better understanding and detailed knowledge of the challenges of persons affected by rare disease and views of persons working with or involved in rare diseases.
Check out the full announcement here and complete the survey by the end of March.
Call for abstracts is now open for the upcoming European Society for Paediatric Endocrinology (ESPE) and French rare diseases healthcare network (OSCAR) being held 18-19 September in Paris France. Late-breaking abstract submission deadline 27 April, 2025, 23:59 CET. Abstract submitters will be notified regarding acceptance/rejection oral/poster by 26 may, 2025.
Check out the full programme with topics such as:
Short Stature and Bone Growth Lessons from the Growth Plate and Tools What’s New in Vitamin D? Teeth as a Model to Study Bone Pathology Fibrous Dysplasia of Bone Round Table on Recent Guidelines and Perspectives [...]Updated June 17
Our colleagues from the European Registries for Rare Endocrine and Bone Conditions (EuRREB) will host a webinar on Friday, 27 June at 1600-1700.
Topics are:
Update on the registries’ activity and latest developments – Ana Priego, EuRREB quality manager, LUMC, Leiden, the Netherlands.
Rare disease research and EuRREB – Loren van der Hoeven, PhD candidate at Amsterdam UMC, Amsterdam, the Netherlands and Savi Shishkov, adult endocrinologist at UMHAT “St. Marina”, Varna, Bulgaria.
