WEBINAR: Management of thyroid nodules in children (ETA guidelines)
Register now for this webinar planned by members of Endo-ERN’s Main Thematic Group 8 Thyroid & endorsed by the European Thyroid Association.
Event chairs: H.M. van Santen, MD PhD, Pediatric Endocrinologist & J. Léger, MD PhD, Pediatric Endocrinologist
1600 Welcome & Introduction, Chairs
1605 Pediatric thyroid nodules: epidemiology, risk factors and differential diagnosis, S.C. Clement, MD PhD, The Netherlands
1620 Why is the workup of the pediatric nodule different than the adult nodule, and its differentiation of thyroid cancer, C.A. Lebbink, MD PhD, The Netherlands
1635 Diagnostic performance of adult-based TIRADS ultrasound risk stratification systems in pediatric thyroid [...]
WEBINAR: The Impact of Solve-RD on Research & Care of Rare Disease Patients
A webinar is taking place that may be of interest to Endo-ERN members. Check out the agenda and speakers:
Towards the future of rare disease diagnostics
08.30 AM – 10.15 AM | Chair: Ana Rath & Gulcin Gumus
Keynote lecture: Towards a personalised systems biomedical approach for the diagnosis of inherited metabolic diseasesInes Thiele, University of Galway
Keynote Lecture: Hyperpersonalized therapies for the long tail of genetic diseaseTimothy Yu, Boston Childrens Hospital & Harvard Medical School
Looking further: Patient organizations and advancing RD research on diagnosisGulcin Gumus, Eurordis
SOLVE-RD 2.0Olaf Riess, University of Tübingen [...]
WEBINAR: Puberty induction in the two sexes – a case based discussion
Register now for a case based discussion featuring experts from Endo-ERN reference centre Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico (Milan, Italy). Puberty induction in the two sexes: a case based discussion will cover the following topics:
Puberty induction in males Prof. Marco Bonomi and Dr. Giovanni Goggi
Puberty induction in females Dr. Biagio Cangiano and Dr. Silvia Federici
This will be an interactive session and questions please be possible.
This webinar is organized by Endo-ERN’s MTG7 which is dedicated to Disorders of sex development (DSD) and the Disorders of sex maturation [...]
WEBINAR: Getting to Know Virtual Consultations
Endo-ERN is hosting a series of webinars to showcase the programmes and resources that are available to support the rare disease community. Do you have a Clinical Patient Management System (CPMS) log-in but have yet to use the platform for a virtual consultation? This is the webinar for you!
Endo-ERN Helpdesk Manager Emily White will cover the following topics:
Virtual consultations in rare disease How to access a virtual consultation The role of HCP/reference centres in virtual consultations Secure technology: Clinical Patient Management Program (CPMS) Q&AIf you cannot currently log-in to the CPMS system, or do not have a [...]
WEBINAR: Getting to Know Virtual Consultations
Endo-ERN is hosting a series of webinars to showcase the programmes and resources that are available to support the rare disease community. Do you have a Clinical Patient Management System (CPMS) log-in but have yet to use the platform for a virtual consultation? This is the webinar for you!
Endo-ERN Helpdesk Manager Emily White will cover the following topics:
Virtual consultations in rare disease How to access a virtual consultation The role of HCP/reference centres in virtual consultations Secure technology: Clinical Patient Management Program (CPMS) Q&AIf you cannot currently log-in to the CPMS system, or do not have a [...]
Endo-ERN Newsletter April – GA highlights
Endo-ERN GA Highlights
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 UpdateOther sessions focused on network activities including main thematic groups [...]
WEBINAR: ESE Talks…Use of EuRRECa databases to enhance our understanding of XLH and parathyroid carcinoma
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)
NEW: Registries website
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 [...]
