Over 150 members of Endo-ERN gathered at the Amsterdam UMC earlier this month for the annual Endo-ERN General Assembly (GA). The was the first in-person meeting of our members since 2019.
It was a productive 2 days with nearly 20 interactive sessions. Our members were very engaged with valuable presentations from external speakers that included:
Landscape of Rare Disease Research in Europe, Christina Kyriakopoulou, European Commission and Mari Murel, ERICA
Best Practise Designing Clinical Trials for Rare Endocrine Disease, Ralf-Dieter Hilgers, University Hospital Aachen
ESE &ESPE Rare Disease Committee Update Other sessions focused on network activities including main thematic groups [...]
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The fourth webinar in the ESE Talks Rare Diseases series, organised as a joint activity between the European Society of Endocrinology (ESE), the European Society of Paediatric Endocrinology (ESPE) and the European Reference Network on Rare Endocrine Conditions (Endo-ERN), will discuss disorders of calcium and phosphate homeostasis.
Topic:
Use of EuRRECa databases to enhance our understanding of XLH and parathyroid carcinoma
Speakers:
Welcome & Introduction
EuRRECa in general – how to use it, Natasha Appelman-Dijkstra (Netherlands)
XLH databases, Alexandra Ertl (France)
Parathyroid carcinomas – which patients/data to be included, Maria Luisa Brandi (Italy)
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Today is an exciting day for our EuRRECa colleagues. A project that has been in the works for weeks and the launch date is finally here!
We are excited to announce their new website: www.eurreb.eu
There could not be a more perfect time to launch it than on 3 April 2023 during the first EuRRECa / EuRR-Bone joint symposium.
With new features tailored to patients, clinicians and researchers, teasers of upcoming events, news and so much more!
Whilst it may not be perfect, they are still working on it. The site will be under construction over the [...]
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The International Society for Pediatric and Adolescent Diabetes (ISPAD) and Varna Pediatric Endocrine Society (VAPES) are hosting the 7th Annual Postgraduate Course and Conference, Diabetes and Rare Endocrine Diseases, 20-22 April, 2023 in Pomorie, Bulgaria.
This is an Endo-ERN endorsed event.
An international panel of speakers will present on topics including:
Managing a newly diagnosed with rare endocrine disease within Endo-ERN New technologies in diabetes New opportunities in the field of growth How to manage rare adrenal conditions Recognition and management of growth-restricted imprinting disorders
Check out the full programme to see the full list of sessions [...]
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Our EuRRECa and EuRR-Bone colleagues will attend the European Calcified Tissue Society (ECTS) 14-18 April in Liverpool, UK. They are busy with presentations and posters over the 5 days. Check out their activity below.
Thursday, 14 April
12:00 – 12:20 Local time (+ 5 min Q&A)
ECTS-IFMRS Workshop: New tools for advancing musculoskeletal research globally: the development of the European Registries for Rare Bone and Mineral Conditions
Dr Ana Luisa Priego Zurita, Department of Medicine, Division of Endocrinology, Leiden University Medical Centre, Leiden, NL
12:30 – 13:00 Local time (+ 5 min Q&A)
Hands on training HubLE: demonstrations EuRR-Bone’s [...]
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This upcoming webinar that will cover the key elements for success when participating as investigator in an industry sponsored clinical trial.
There will be a specific emphasis on rare diseases, highlighting the key needs from the industry side, and the common reasons for failure.
The goal is to have a common understanding of the key requirements for conducting such studies, the issues typically encountered, and the best practices that allow to overcome the main challenges.
This webinar will also include elements around assessing feasibility, ensuring GCP compliance and data quality, and setting an optimal relationship between sponsor and site.
[...]
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The 61st Annual European Society for Paediatric Endocrinology (ESPE) will take place 21-23 September in The Hague, Netherlands.
The Endo-ERN project office will attend and host a booth and a symposium.
The Endo-ERN symposium will be held on Friday, 22 September, 9:30 – 11:00. The programme is:
Perspective of Endo-ERN for the next five years
Olaf Hiort, Deputy coordinator Endo-ERN, Paediatric chair, Germany
European medicine shortages: How can we avoid a disaster for patients with rare conditions?
Johan de Graaf, Dutch Pituitary Foundation, the Netherlands
It matters – set up of clinical trials in rare disease
Peter Kühnen, Charité [...]
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Updated May 9
Endo-ERN has withdrawn from the ECE 2023 and the on-site SCAB meeting has been cancelled.
It is still possible to engage with Endo-ERN by:
Attending the ESE & Endo-ERN Joint Symposium Scheduling a 1:1 with the EuRRECa registries team or CPMS for virtual consultations team to setup or troubleshoot your account Check out a EuRRECa abstract presentation
All details can be found in our dedicated ECE newsletter.
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