Register your interest: ERDRI.spider training (on-line)
The European Platform on Rare Disease Registration (EU RD Platform) is happy to inform you that after the launch of the pseudonymisation tool SPIDER last spring, the Platform is now offering a series of specific trainings planned for November and December (dates TBD). There are two types of online SPIDER trainings planned:
A theoretical but nevertheless interactive session that deals more with the basic principles and functions of SPIDER (online). A hands-on session for those registries that have already completed their entries in ERDRI (both ERDRI.dor and ERDRI.mdr) (online).
Staff [...]
EURORDIS webinar series on Clinical Practice Guidelines – November 14 and 24
EURORDIS is hosting two FREE webinars on Clinical Practice Guidelines:
Monday, November 14, 2022 at 1600 (CET)Roadmap for Guideline Implementation
Thursday, November 24, 2022 at 1600 (CET)
Appraisal of an Existing Guideline
Additional resources on Clinical Practice Guidelines co-developed by EURORDIS include:
Guide for Patient involvement in the development of clinical practice guidelines & clinical decision support tools ePAG Good Practices: Clinical Practice Guideline development recorded webinar
ERN-ITHACA Multidisciplinary Fetal Diagnostics Winter School
The Winter School on Fetal Diagnosis organised by the ERN-ITHACA aims to address a learning gap in fetal phenotyping, genetic analysis, and data interpretation.
As a single-day course it will include basic lectures and in depth-workshops on phenotyping, prenatal genomic testing, and the implications for genetic counselling. To finalize, the program will bridge the addressed fields with interdisciplinary case discussions.
The course is open to specialists and specialists in training in the fields of clinical and laboratory genetics, bioinformatics, obstetrics, pathology with a special interest in prenatal medicine. The program gathers excellent scientists from ITHACA affiliates and collaborating partners [...]
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 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.
ESE Talks… Rare Diseases: MEN-1 – a joint webinar from ESE, Endo-ERN and ESPE
Join us for the second joint webinar from ESE, ESPE and Endo-ERN, on Rare Endocrine Diseases.
Holistic approach to the treatment and surveillance of MEN1-patients and their families
Speakers: Gregory Kaltsas (Greece), Gerlof Valk (Netherlands), Carla Pieterman (Netherlands)
EuRRECa/EuRR-Bone Update
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.
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 [...]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 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 [...]
