Endo-ERN General Assembly 2022

The Endo-ERN General Assembly 2022 will be virtually held on Tuesday & Wednesday 15 & 16th of February 2022.

 

Tuesday 15th of February 2022

09:30 – 10:30 hrs Steering Committee & Advisory Board meeting
11.00 – 12.45 hrs GENERAL ASSEMBLY
13:30 – 16:00 hrs Meet and interact with your MTG co-workers

Wednesday 16th of February 2022

10:00 – 11:45 hrs GENERAL ASSEMBLY
12:30 – 15:00 hrs Meet and interact with your MTG co-workers

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Prestigious EJPRD ERN Research Mobility Fellowship for drs. Eva Coopmans and drs. Oana Danila

The Research Mobility Fellowships of the European Joint Program on Rare Diseases (EJP RD) – The European Reference Networks (ERN) are awarded twice a year to a leading physician or researcher to gain new competencies and expertise in a European institution that specializes in research on rare diseases.

Eva Coopmans is a physician and researcher at the Center for Endocrine Tumors Leiden under the supervision of Prof. A.M. Pereira Arias and Prof. N.R. Biermasz. She received the EJP RD – ERN fellowship for ‘GH-secreting pituitary tumours: nip therapy resistance in the bud (pilot study)’. With this fellowship she can address [...]

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Endo-ERN webinar: Update on the management of 46,XX Ovarian Dysgenesis and Primary Ovarian Insufficiency

On Thursday September 9th at 15:00 – 16:00 CET an Endo-ERN webinar about “Update on the management of 46,XX Ovarian Dysgenesis and Primary Ovarian Insufficiency” will be given by Philippe Touraine from APHP-Pitié Salpêtrière Hospital in France.

Primary (premature) ovarian insufficiency (POI) is defined as a loss of ovarian activity before the age of 40, and is characterized by menstrual disturbances (amenorrhea or oligomenorrhea) with elevated gonadotropins (follicle-stimulating hormone [FSH] ≥ 25 IU/L) and low serum estradiol levels.The incidence of POI is around 1 per 100 women overall, and 1 per 1000 women under the age of 30 years. POI [...]

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Endo-ERN webinar: Update on congenital hyperinsulinism

On Tuesday July 6th at 16:00 – 17:00 CET an Endo-ERN webinar about “Update on congenital hyperinsulinism” will be given by Oliver Blankenstein, Peter Kühnen, Sebastian Kummer, Alena Welters and Thomas Meissner from Charité – Universitätsmedizin Berlin / Universitätsklinikum Düsseldorf.

Congenital hyperinsulinism is the most frequent cause of severe transient and persistent neonatal hypoglycemia. The etiology and the clinical course are highly variable. Today, we still find a high proportion of patients suffering from hypoglycemic brain damage.

This update will focus on the rational approach to evaluation and management of a patient with suspected hyperinsulinism. Efforts to improve the [...]

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Resource Webinar: hPSCreg

As part of the EJP RD Resource Webinar series, the next webinar will be dedicated to hPSCreg and will be held on June 21st.

The human pluripotent stem cell registry (hPSCreg) maintains resources to track the usage of human embryonic and induced pluripotent stem cell lines from research to clinical applications. Participants will be given an overview of hPSCreg from different stakeholder perspectives (basic and translational researchers, industry, and funders) and will learn about what data is available for each registered line and the benefits of registering lines in hPSCreg.

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ERN Workshop “CLINICAL RESEARCH: THE BASICS & BEYOND WORKSHOP IN CLINICAL EPIDEMIOLOGICAL RESEARCH FOR ERNs”

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on clinical epidemiological research for ERNs titled “Clinical Research: The Basics & Beyond” (consisting of presentations by experts in the field of epidemiology and a feedback session on the research projects of participants) is being organised by Prof. Olaf Dekkers and Prof. Frits Rosendaal of the Leiden University Medical Center.

The in-person event will take place over two days on 30th September and 1st October 2021 at the Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, the Netherlands.

The workshop is open [...]

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IFCAH Symposium

10 years CAH Research Support

IFCAH is pleased to welcome all patients, patient’s families, researchers and clinicians to share their very last findings on CAH, obtained thanks to 10 years of IFCAH support.

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