ERN Clinical Exchange Program: Modena to Oslo

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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ERN Clinical Exchange Program : Luxembourg to Germany

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 27th and 28th 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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Patient journeys: A tool to help patients with rare endocrine diseases

Patient journeys are instruments developed by EURORDIS, The Voice of Rare Disease Patients in Europe, to collect patients’ experiences; they may identify gaps and areas deserving improvement, as well as elements positively considered by affected persons. This webinar is a presentation by the authors of the recently published paper of the same title.

Objectives of Endo-ERN Work Package 4 (ways to improve quality of care and patient view) Susan M Webb, IIB-Sant Pau, Research Center for Pituitary Diseases, Barcelona, Spain

What are Patient Journeys (PJ), its methodology, added value and clinical application Matt Bolz-Johnson, Health & Network Advisor, EURODIS
 [...]

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EURORDIS All ePAG Meeting

The EURORDIS All ePAG Meeting will take place between November 14-17, 2022.

This will be an online event of 5 sessions over 4 days. Each session is 1 hour and there are 2 networking sessions and 3 sessions dedicated to exploring how and why to listen to and represent your community. These sessions were inspired by a practical guide co-developed by EURORDIS and the patient community.

You can join as many sessions as you like and pre-registration is not required.

Bookmark this page for the meeting links below or download the agenda which contains the meeting links.

 [...]

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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 [...]

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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

REGISTER NOW

 

Thursday, November 24, 2022 at 1600 (CET)

Appraisal of an Existing Guideline

REGISTER NOW

 

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

 

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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 [...]

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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 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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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 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 [...]

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