WEBINAR: Klinefelter syndrome – from genomics to the clinic

One of the aims of Endo-ERN is to share the expert across the network and beyond. We are fortunate that our members are very active and sharing their expertise.

We are delighted that Claus Gravholt, Aarhus University Hospital will share his expertise with the webinar Klinefelter syndrome – from genomics to the clinic on Thursday, 31 August at 1600.

The webinar will cover several aspects including:

Diagnostics Genetics and implications for future genotype-phenotype relations Epidemiology Issues in childhood Morbidity in adulthood Testosterone treatment and the effect on morbidity

Register now using the link below.

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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 [...]

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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 diseases

Ines Thiele, University of Galway

Keynote Lecture: Hyperpersonalized therapies for the long tail of genetic disease

Timothy Yu, Boston Childrens Hospital & Harvard Medical School

Looking further: Patient organizations and advancing RD research on diagnosis

Gulcin Gumus, Eurordis

SOLVE-RD 2.0
Olaf Riess, University of Tübingen [...]

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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 [...]

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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&A

If you cannot currently log-in to the CPMS system, or do not have a [...]

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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&A

If you cannot currently log-in to the CPMS system, or do not have a [...]

Continue reading

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 Update

Other sessions focused on network activities including main thematic groups [...]

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