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Monday, April 3, 2023

The 1st Joint EuRRECa and EuRR-Bone meeting will take place in the morning at Leiden University Medical Centre, the day before Endo-ERN General Assembly. Click here to register and see the programme here. Faisal Ahmed’s Inaugural Lecture will take place during the afternoon at Universiteit Leiden. Past event report Oct 2022

ERICA – ERN Data Management Strategy Multistakeholder Workshop, Heidelberg

This workshop included discussions aimed at helping ERNs in setting up, maintaining and improving their registries. The valuable face-to-face interaction, not possible during the recent period, facilitated [...]

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Dr. Arianne Dessens from the Child & Psychiatry Department at Erasmus MC participated in an Endo-ERN Exchange to facilitate the foundation of an international learning network for disorders/difference of sex development (DSD). Her detailed summary outlines the experience of developing a specialized learning network using the ERN Clinical Exchange opportunity.

“Disorders/differences of sex development (DSD) can be treated well medically, but families will encounter many psychosocial challenges. Providers of psychosocial care are facing challenges to find adaptations in line with recent development in medical knowledge and practices and changed patients’ and parental attitudes and expectations regarding clinical management. Harmonization of [...]

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Dr Sara De Vincentis shares her experience in Oslo and her inspiration for further collaboration.

“I have really enjoyed my Endo-ERN exchange period at the Oslo University Hospital, Rikshospitalet.

Like my belonging Unit of Endocrinology, Azienda Ospedaliero-Universitaria of Modena, the section of Specialized Endocrinology of Oslo is a tertiary-level European centre with a special interest in pituitary and calcium metabolic disorders.

Sharing patients with such rare disorders together with local physicians, through educational and multidisciplinary sessions, has given me the opportunity to further professionalize in this field.

Therefore, this exchange could hopefully represent the first step of future collaborations from [...]

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A successful exchange between Dr Marianne Becker, Centre Hospitalier de Luxembourg and Prof Semler, University Hospital in Cologne. Dr Becker provided the following report.

“I had the chance to visit Prof. Oliver Semler at the University Hospital in Cologne on the 27^th and 28^th of July 2022 in the setting of the ERN Clinical Exchange Program.

I accompanied Prof. Semler during his consultation for rare bone diseases (osteogenesis imperfecta, achondroplasia, XLH) and had the opportunity do discuss several cases from my consultation with him.

I participated at a team meeting with his endocrine team, I visited the pediatric rehabilitation center [...]

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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 and presentations were given by: Prof. Olaf Hiort, Prof. Laura de Graaf, Prof. Nienke Biermasz and Prof. Jérôme Bertherat. Furthermore a fruitful Steering Committee / Advisory Board meeting was organized during which ongoing activities and future plans were discussed.

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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 in the registries was presented in a posters session and presentations. ENEA 2022: The EuRRECa Pituitary study group held its first face to face meeting this year in Lyon. The group welcomed new members and discussed current activities such as the Pituitary Tumour module, active since December 2021, and future plans. Endo-ERN members participating in the registries: to date 39 [...]

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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.

If you would like to contribute to open panels for your relevant MTG please contact our Operational Helpdesk (OH) for assistance. If you wish to create a patient panel, please see our webpage for help in doing so. We ask all existing Panel Leads to close any open/signed-off panels fully once the discussion [...]

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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 they have a clinical character. It is also possible to organize exchanges between centers of different ERNs, or even between an ERN and a non-ERN center. The Programme is meant for all professionals, including nurses, technicians, analysts as well as patient representatives. Please contact us [...]

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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 Research Trust/ICON and ERN EuroBloodNet (VHIR, APHP), and the active contribution of ERNs and ePAGs. From Endo-ERN prof. Nienke Biermasz (LUMC) have participated in the ERICA WP3 PCEWG (Patient-centred expert working group) and contributed in this first version. Via ERICA you [...]

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In this ERICA webinar, Anton Ussi (Operations & Finance Director at EATRIS), together with Agustin Arasanz Duque (Senior Innovation Manager at EATRIS), will provide practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD. This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation. It builds on the introductory webinar “Current research services available for the rare diseases community” that was organized in November 2021 (available on the ERICA website Continue reading →