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.
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 2021-2022 closed effective January 31, 2023. An overview of past exchanges is provided below. If you are interested in applying for the current Exchange Programme you can find more information here.
Newsletter ERN Exchange programme (May 2022)
Newsletter ERN Exchange programme (July 2021)
Name | Institute | Hosting Institute | Exchange Information |
---|---|---|---|
Savi Shishkov | UMHAT “Sveta Marina” (Varna) | Leiden University Medical Center | 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. |
Anna Strandqvist | Karolinska University Hospital | Erasmus MC: University Medical Center Rotterdam | Clinic work for psychosocial support in DSD patient groups From 2021-10-19 to 2021-10-23 over 5 working days. |
Marianne Becker | Centre Hospitalier de Luxembourg | University of Cologne | 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. |
Sara de Vincentis | AOU di Modena | Oslo University Hospital HF1. | 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. |
Arianne Dessens | Erasmus MC: University Medical Center Rotterdam | Karolinska University Hospital | Development and implementation of clinical psychological support in DSD patient groups From 2022-09-20 to 2022-09-26 over 5 working days. |
Nikolinka Yordanova | UMHAT “Sveta Marina” (Varna) | Erasmus MC: University Medical Center Rotterdam | 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. |
Julie VandeVelde | Ghent University Hospital | Universitätsklinikum Schleswig-Holstein | How to perform the apolipoprotein (APOD) in vitro assay From 2022-11-01 to 2022-11-25 over 20 working days. |
Iiro Kostiainen | HUS Helsinki University Hospital, Hospital District of Helsinki and Uusimaa (EndoERN_FIN) | University Medical Center Utrecht – Dept of Endocrine Oncology | MEN1 manifestations in children and adolescents reaching transitional age From 2022-11-14 to 2022-11-25 over 10 working days. |
Sandra Wessmann | Karolinska University Hospital | Ghent University Hospital | Examination and diagnostic work on surgically removed gonads from patients with DSD From 2022-12-05 to 2022-12-09 over 5 working days. |
Zhaneta Yaneva | UMHAT “Sveta Marina” (Varna) | Ludwig-Maximilian-University Munich | 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. |
Eeva Ryhanen | HUS Helsinki University Hospital, Hospital District of Helsinki and Uusimaa (EndoERN_FIN) | Leiden University Medical Center | Clinical management of patients with calcium-phosphate, metabolic and rare bone diseases From 2023-01-16 to 2023-01-20 over 5 working days. |
Dirk-Jan Stenvers | Amsterdam UMC, location AMC | University of Basel | Knowledge exchange about development of endocrine innovations guided by value based healthcare From 2023-01-24 to 2023-01-27 over 4 working days. |
Endo-ERN Patient Advocacy Group | Amsterdam UMC, location AMC |
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 |
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