Endocrine Abstracts

The mission of the European Reference Network on Rare Endocrine Conditions (Endo-ERN) is to reduce and ultimately abolish inaequalities in care for patients with rare endocrine conditions across Europe. Endo-ERN provides equality between paediatric and adult patients, and is supported by the European Society of Endocrinology and the European Society of Paediatric Endocrinology. In order to achieve Endo-ERN’s mission and accomplish the concrete objectives the first year wa...

The European Reference Network on Rare Endocrine Conditions (Endo-ERN) was founded to improve access to high-quality health care across Europe for patients with rare hormonal disorders. It is meant to encompass all rare endocrine conditions with an equal distribution of paediatric and adult care. The Main Thematic Group (MTG) ‘Sex Development and Maturation’ is dedicated to the medical conditions involving the reproductive system in both sexes, including the broad ra...

Introduction: The presentation is based on experiences and opinions of CAH patients represented by German AGS parents and patient initiatives.Meaning of patient and family perspectives: The aim is to provide an overview about wishes and expectations of German CAH patients. A special view will be given to quality of live and influencing factors of treatment.Examples of family perspectives: The importance and meaning of patient and f...