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ERN Clinical Exchange Programme
There are still funds available to organize exchange visits (on top of those already planned). Exchange visits can be planned until 31 December 2022, and implemented until the end of January 2023 at the latest. Then, the present programme will close.
Clinical exchanges can be individual, group visits or group meetings, as long as…
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New staff members
We are happy to introduce you to our new staff members! |
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Nathalie Koopmans
Nathalie Koopmans has many years experience as an assistant project controller at UMC Utrecht and the Prinses Maxima Center in Utrecht. She started on August 23th, as a project assistant for the Endo-ERN project. She is based at Amsterdam UMC in the Netherlands.
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Aimee Casey
Aimee Casey comes from a Marketing and Communications background and started on October 1st, as a Communication Manager for the Endo-ERN project. She is based at Amsterdam UMC in the Netherlands.
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Tess de Rooij
Tess de Rooij comes from a marketing and market research background and started in July as a Junior EU Project Manager for both the EuRRECa project and the EuRR-Bone project. She is based at the LUMC in Leiden, the Netherlands.
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Jacqueline van der Blom
Jacqueline van der Blom comes from a tourism management and marketing background and started in September as a project assistant for EuRRECa and the EuRR-Bone project. She is based at the LUMC in Leiden, the Netherlands.
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Evaluation of ERNs
It is 5 years since the ERNs were established and therefore it is time to look at all aspects of our network to determine the worth and significance of the work and actions developed by the ERNs. This upcoming evaluation process will be transparent and independent from the policy making, and developed by a third party, the Independent Evaluation Body (IEB), to enhance credibility while evaluating both the Endo-ERN and our full member HCPs (only those who became member in 2017). As we begin this process, the Endo-ERN coordination team will share information and instructions with our members directly and via our Evaluation webpage. The Evaluation Manual and toolbox are already available so please peruse this when you can!
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The ERICA Patient Reported Outcome Measures (PROMs) Repository
The ERICA Patient Reported Outcome Measures (PROMs) Repository is the first attempt to identify and centralize Clinical Assessment Outcomes questionnaires of relevance for rare diseases and constitutes a milestone in the Europe-wide standardization of Patient-Centered Outcome Measures (PCOMs) and PROMs for rare diseases. It has been made possible through the joint collaboration between Orphanet, Mapi…
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CPMS Open Panels
The Clinical Patient Management System (CPMS) is there for all HCPs to use and contribute to relevant rare endocrine patient panels. Currently, there are 41 open panels in the system, across all of our MTGs.....
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Webinar "For a prolonged use of antithyroid drug in children with Graves'disease"
On Thursday September 29th an Endo-ERN webinar was held entitled “For a prolonged use of antithyroid drug in children with Graves' disease" given by Prof. Juliane Léger from Hôpital Universitaire Robert Debré, France and Dr. Edward Visser from Erasmus MC: University Medical Center Rotterdam, the Netherlands.
If you missed the live version, you can still view a recording of the webinar.
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EuRRECa/EuRR-Bone Update
- ESPE 2022: A few weeks ago EuRRECa and EuRR-Bone joined Endo-ERN at the ESPE 2022 in Rome! We have talked to many interesting people and explained the use and objective of the registries. Research performed with the data collected...
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Endocrine Connections Special Issue
We offer congratulations and thanks to our members and colleagues who have so far submitted their paper to the Endocrine Connections Special Issue on behalf of Endo-ERN. Click here to see our full list of Endo-ERN publications at the website.
For those still working on manuscripts please complete your submission as soon as possible. Please contact us if you have any issues or unforeseen delays.
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CPMS Review Paper
We are pleased to announce the publication of our latest CPMS review paper by our Operational Helpdesk and Endo-ERN team as part of the supplemental series created in collaboration with Endocrine Connection. Please check out our paper at [link] for more information on how CPMS has grown, progressed and developed in the last 2 years, as well as the barriers it faces and our plans for the future.
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60th Annual meeting ESPE 2022
Wednesday 14th until Saterday 17th of September, the 60th annual ESPE meeting was held in Rome. Endo-ERN, together with EuRRECa and EuRR-Bone were represented with a booth where we answered many questions of visitors and made new contacts for our network.
The Endo-ERN Session was hosted by Prof. Olaf Hiort and Prof. Luca Persani…
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ERN Research Training Workshops funding opportunity
The ERN Research Training Workshops funding opportunity is now open for applications until October 15th, 2022. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary…
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