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 27 EU member states+Norway 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.
The Exchange Programme is designed to strengthen the clinical capacities and organisation of the Network, which is in line with the mission of Endo-ERN to reduce present inequalities in rare disease care.
The ERN Exchange Programme is currently closed and will reopen later in the year. To be kept up-to-date register for the Endo-ERN newsletter (choose training&education) where the call for applications will be announced. In the meantime you can review the criteria or look for a host.
Name | Institute | Hosting Institute | Year | Exchange Information |
---|---|---|---|---|
Sarah Craus | Mater Dei Hospital1. | Beaumont Hospital & Children’s Health Ireland | 2024 | Engage with MDT and expand rare endocrine knowledge with a focus on CAH and MEN. From 2024-23-09 to 2024-27-09 over 5 working days. |
Marica Arvigo | IRCCS Ospedale Policlinico San Martino – Genova – Italy | Leiden University Medical Center | 2024 | Sharing of lab protocol related to pit-NET primary cultures. From 2024-21-10 to 2024-25-10 over 5 working days. |
Marianna Viukari | HUS Helsinki University Hospital, Hospital District of Helsinki and Uusimaa (EndoERN_FIN) | Ludwig-Maximilian-University Munich | 2024 | To increase knowledge of rare adrenal conditions and transition in CAH From 2024-14-10 to 2024-20-10 over 5 working days. |
Maciej Bulwa | Maria Sklodowska-Curie National Research Institute of Oncology (MSCNRIO) | Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico | 2024 | Learn about diagnostic procedures and treatment methods in endocrine disorders at a leading endocrinology centre in Europe. From 2024-07-01 to 2024-31-07 over 31 working days. |
Endo-ERN Patient Advocacy Group | Amsterdam UMC | 2023 | New insights into clinical development of endocrine disorders; update on Endo-ERN activities involving ePAGs; improving care from the patients perspective; update on data registries; alignment with EURORDIS From 2023-01-29 to 2023-01-31 over 3 working days. | |
Dirk-Jan Stenvers | Amsterdam UMC | University of Basel | 2023 | Knowledge exchange about development of endocrine innovations guided by value based healthcare From 2023-01-24 to 2023-01-27 over 4 working days. |
Eeva Ryhanen | HUS Helsinki University Hospital, Hospital District of Helsinki and Uusimaa (EndoERN_FIN) | Leiden University Medical Center | 2023 | Clinical management of patients with calcium-phosphate; metabolic and rare bone diseases From 2023-01-16 to 2023-01-20 over 5 working days. |
Zhaneta Yaneva | UMHAT “Sveta Marina” (Varna) | Ludwig-Maximilian-University Munich | 2023 | Establishment of a center specific transition strategy that will prevent disruption of care for patients with rare endocrine diseases From 2023-01-03 to 2023-01-31 over 20 working days. |
Sandra Wessmann | Karolinska University Hospital | Ghent University Hospital | 2022 | Examination and diagnostic work on surgically removed gonads from patients with DSD From 2022-12-05 to 2022-12-09 over 5 working days. |
Iiro Kostiainen | HUS Helsinki University Hospital, Hospital District of Helsinki and Uusimaa (EndoERN_FIN) | University Medical Center Utrecht – Dept of Endocrine Oncology | 2022 | MEN1 manifestations in children and adolescents reaching transitional age From 2022-11-14 to 2022-11-25 over 10 working days. |
Julie VandeVelde | Ghent University Hospital | Universitätsklinikum Schleswig-Holstein | 2022 | How to perform the apolipoprotein (APOD) in vitro assay From 2022-11-01 to 2022-11-25 over 20 working days. |
Nikolinka Yordanova | UMHAT “Sveta Marina” (Varna) | Erasmus MC: University Medical Center Rotterdam | 2022 | Contemporary care for pediatric patients and for transition process from experts in the field of PWS and short SGA children From 2022-09-26 to 2022-10-21 over 20 working days. |
Arianne Dessens | Erasmus MC: University Medical Center Rotterdam | Karolinska University Hospital | 2022 | Development and implementation of clinical psychological support in DSD patient groups From 2022-09-20 to 2022-09-26 over 5 working days. |
Sara de Vincentis | AOU di Modena | Oslo University Hospital HF1. | 2022 | Outcome measurements and aligning in registries / further professionalization of the MDT’s and its integration in specific patient care pathways; with a special interest in calcium metabolic disorders From 2022-09-12 to 2022-10-23 over 30 working days. |
Marianne Becker | Centre Hospitalier de Luxembourg | University of Cologne | 2022 | patient pathyway for pediatric patients suffering from osteoporosis and osteogenesis imperfecta; mutlidisciplinary approach and the organisation of transition to adult care for these patients From 2022-07-27 to 2022-07-28 over 1 working days. |
Anna Strandqvist | Karolinska University Hospital | Erasmus MC: University Medical Center Rotterdam | 2021 | Clinic work for psychosocial support in DSD patient groups From 2021-10-19 to 2021-10-23 over 5 working days. |
Savi Shishkov | UMHAT “Sveta Marina” (Varna) | Leiden University Medical Center | 2021 | Pituitary Center of Excellence: Insight in shared decision making ; treatment; and outcome evaluation From 2021-10-04 to 2021-10-29 over 20 working days. |
1. This Reference Centre is an Affiliated partner, read more.