Endo-ERN is focused on 8 main thematic groups (MTGs) which cover rare and/or complex endocrine conditions
Endo-ERN is a network of 100+ Reference Centres (RCs) in 28 EU member states that offers access to clinical experts for patients with rare endocrine conditions.
Endo-ERN is the network for rare endocrine conditions providing healthcare professionals with access to a variety of resources to support patient care.
If you work at a member institution this page will help with your Endo-ERN contributions.
Access to rare disease expertise without the need to travel is a core ERN objective. Our ePAGs contribute to all Endo-ERN activities.
For Growth & Genetic Obesity Syndromes (MTG5) sub thematic groups are identified based on a different multidisciplinary team and different diagnostic and treatment approaches.
A group of imprinting disorders for which care have been well organised:
Prader Willi Syndrome, Silver Russell Syndrome, and Beckwith Wiedemann Syndrome and a group of Growth hormone and IGF-I insensitivity including Laron and Noonan Syndrome, as well as other overgrowth and growth retardation syndromes.
Rare diseases, affecting growth, with life-long endocrine and metabolic consequences, include imprinting disorders with common molecular mechanisms (Prader Willi, Silver Russell, Beckwith Wiedemann syndromes), a group of patients with GH and/or IGF-I insensitivity and patients with other causes of short stature or overgrowth. This group of disorders needs a multidisciplinary care, networks of physicians around Europe to propose common molecular diagnosis strategies, care and clinical trials. Current challenges focus on improving clinical and molecular diagnosis, personalised therapy, and unraveling long-term consequences of these clinical syndromes, thereby proposing better diagnosis, treatment and information from the prenatal period to adulthood for the patients and their families.
Subscribe to our email newsletter for useful information and valuable resources.