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A joint webinar from ESE, Endo-ERN and ESPE
On June 28th a sucessfull joint webinar from ESE, Endo-ERN and ESPE was organised entitled "Essential insights for the transition from paediatric to adulthood care in rare pituitary disorders" and was led by the chairs Violeta Iotova from Bulgaria, Nienke Biermasz from the Netherlands and Evangelia Charmandari from Greece. Amongst other presentations, the webinar also included a valuable contribution from Diana Vitali, Italian Endo-ERN patient representative.
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Endo-ERN webinar: For a prolonged use of antithyroid drug in children with Graves’disease
On Thursday September 29th at 17:00 – 18:00 CET an Endo-ERN webinar entitled “For a prolonged use of antithyroid drug in children with Graves’disease” will be given by Juliane Leger from Hôpital Universitaire Robert Debré, France and Edward Visser from Erasmus MC: University Medical Center Rotterdam, the Netherlands.
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ESPE 2022
Endo-ERN will be present at ESPE 2022 amongst others with an Endo-ERN symposium on Friday 16 September at 09:30 - 11:00hrs. Furthermore Endo-ERN will have a stand, nicely combined with the stand of the EuRRECa and EuRR-Bone registries and the Endo-ERN Steering & Committee meeting will take place on Friday 16 September (by invitation only).
Programme Endo-ERN symposium Friday 16 September:
- Endo-ERN – paving the way to life-long expert care for rare endocrine conditions
- Understanding and Preventing Drop-Out in the Transition from Paediatric to Adult Endocrine Healthcare
- Transition in pituitary diseases
- Connecting science and care: Endo-ERN linking ESE and ESPE (the adult ESE perspective of collaboration)
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ERN Clinical Exchange Programme
We are pleased that various members applied for the ERN Clinical Exchange Programme. We still have some remaining packages available in Endo-ERN. Exchanges are also possible between member HCPs of different ERNs, both for individual exchanges or clinical focussed group meetings. Exchanges should take place latest in January 2023. In case of interest, please apply via the link below or just send an email to the Endo-ERN Coordinating Office.
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CPMS Newsletter Summer 2022
The CPMS letter is out now, read more about:
- CPMS training
- Webinars for CPMS
- Tips & Tricks
- Help & Support
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Call 4 new ePAG Advocates
Are you interested in designating a patient representative to get involved in the European Reference Networks (ERNs) as an ePAG advocate? This might be your chance to make the voice of your patient community heard at the European level. Don’t miss it!
At the moment, we specially encourage applications from:
- Patient organisations from Eastern and Northern European countries;
- Patient organisations covering the disease areas included in this list.
For more information on ERNs and the role of ePAG advocates you may watch this video and read this short guide.
If you want information on the specific requirements for Patients Organisations to apply, the required skills and experience for candidates and the application process, please visit our website or directly contact our Endo-ERN Coordinating Office.
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ERICA 2nd GA in Bologna (presentations available)
The European Rare Disease Research Coordination and Support Action- ERICA 2nd General Assembly took place in Bologna from June 20-22, 2022, as a hybrid meeting with more than 100 people attending in person and online.
The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. This symposium was a great opportunity to discuss the progress and future of the ERN related research activities and to participate in the WP-Specific Expert Working Group sessions to exchange the success stories and to brainstorm with the best experts on the field. Endo-ERN was well represented by Alberto Pereira (ERICA coordinator), Nienke Biermasz, Luca Persani Guillaume Assié and Charlotte van Beuzekom (Endo-ERN Project-manager)
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ERICA generated customisable template documents to be used by ERNs
EJP RD and ERICA developed a series a customisable template documents that can be used by the European Reference Networks (ERNs) to obtain the consent of the patients to get their data included in the registry (Informed Consent Form) and establish their governance structure (Data Access Policy). For EuRRECa and EuRR-Bone this is already implemented and operational.
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EuRRECa/EuRR-Bone databases
The EuRRECa/EuRR-Bone databases have been successfully transferred from the University of Glasgow to Leiden University Medical Centre on 4th May 2022. The platforms can be accessed using the existing login credentials using new links.
Core Registry
e-REC
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New member of EuRR-Bone registries team
Dr. Mariya Cherenko is an adult endocrinologist who started her postdoc position with the European Registries for Rare Endocrine, Bone and Mineral Conditions in May 2022 where she will be focusing on developing disease specific modules.
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Drop in sessions
Anyone who is interested in learning more about the EuRRECa/EuRR-Bone platforms (e-REC and Core Registry) can join by Zoom. No need to register for the session, just come along!
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