Endo-ERN Rare Disease Day Poster

Rare Disease Day (February 28) is the perfect opportunity to remind your colleagues about your involvement with Endo-ERN.

We created an A3 poster that you can print and display in your department and/or around your hospital to raise awareness of rare disease and your involvement with Endo-ERN.

Download here (, 496 KB)

 

 

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Endo-ERN and ERICA Coordinator Alberto Pereira at the International Conference on Clinical Research Networks for Rare Diseases

At a two-day conference (Dec 1-2, 2022) on clinical research networks (CRNs) for rare diseases the experts from different continents gathered in Paris to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks. Endo-ERN and ERICA Coordinator Alberto Pereira introduced the European Rare Disease Research Coordination and Support Action(ERICA) consortium achievements where all the ERNs take part to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

Want to stay up-to-date with ERICA’s activities? Subscribe to their newsletter here.

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ERICA Educational Webinar 2: Practical guide on how to use the Catalogue of services and the IMT

In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), Rosan Vegter (Scientific and Education Manager at EATRIS) together with Agustin Arasanz Duque (Senior Innovation Manager at VHIR/EATRIS), provided 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.

Check out the recording.

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Welcome Chris Breen new Endo-ERN ePAG

We extend a warm welcome to our newest ePAG Chris Breen from the Klinefelter’s Syndrome Association UK. Chris shares his journey to diagnosis:

“I wasn’t diagnosed with Klinefelter’s until about 7 years ago when I was 50. And have since discovered I have several underlining health problems which I was previously unaware of.

However, for me the diagnosis was very validating as it explained things that had happened throughout my life I previously attributed to just being slightly different from the average person.

 

Until I had my diagnosis, I had never heard of it, despite working in Healthcare since [...]

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UPDATE: EuRRECa/EuRR-Bone

Mark your calendar and save the date!

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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ERN Clinical Exchange Program: Europe and Beyond

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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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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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 date 39 [...]

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