The 8th I-DSD/CAH Symposium 2021

The 8th International Symposium on DSD will take place from 8 – 10 July 2021 at the University Hospital Bern.

The registration and abstract site will open on 21st January 2021.

 

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Publication: ENDOCRINOLOGY IN THE TIME OF COVID-19: Clinical management of neuroendocrine neoplasms (NENs)

We are proud to announce that the manuscript entitled
ENDOCRINOLOGY IN THE TIME OF COVID-19: Clinical management of neuroendocrine neoplasms (NENs), which involves various Endo-ERN members, has been accepted for publication in the European Journal of Endocrinology.

To view the publication, click here

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The ERN animation clip for the patients and health professionals subtitled and dubbed in all EU languages is now available

The video explains to patients affected by rare, low prevalence and complex diseases what the European Reference Networks (ERN) are and how they might support them to identify diagnosis or treatment, in the case their health professional considers the support of the ERNs is necessary.

Click here to view the video with subtitles in all EU languages and Norwegian.

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Research Training Workshop Call has been extended until the 12th October 2020

Research Training Workshop Call has been extended until the 12th October 2020.

The goal of the workshops is to train researchers and clinicians affiliated to ERNs on innovative themes related to rare diseases research. Training themes must have a cross-ERN added value and may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc.

Topics can be proposed by clinicians/investigators affiliated to an EJP RD beneficiary institution, an ERN- Full Member or an ERN-Affiliated Partner institution

For further details please click

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Endo-ERN webinar: Wolfram syndrome

On Wednesday October 7th at 15:00 – 16:00 CET an Endo-ERN webinar about “Wolfram syndrome” is organised. The Endo-ERN webinar will be held by Prof Timothy Barrett from University Hospitals Birmingham in the United Kingdom.

Wolfram syndrome is a rare monogenic form of diabetes and neurodegeneration, with a prevalence of about 1 in every 150 children with diabetes. Classically it presents with childhood onset diabetes, optic atrophy, diabetes insipidus and diabetes mellitus. In recent years, a much wider spectrum of disease has been recognised with neonatal onset, adult onset, and partial forms. This webinar uses case examples to discuss [...]

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Endo-ERN webinar: Prader-willi syndrome

On Tuesday September 29th at 17:00 – 18:00 CET an Endo-ERN webinar about “How multidisciplinary care and growth hormone treatment can improve the health of children with Prader-Willi syndrome” will be held by Prof. dr. & ESPE president Anita Hokken from Erasmus MC: University Medical Center Rotterdam in the Netherlands.

Prader-Willi syndrome (PWS) is a rare disorder characterized by hypotonia, hyperphagia, obesity, mild to moderate developmental delay, behavioral problems, hypogonadism and short stature. Its incidence is estimated between 1:15,000-1:30,000 live births. PWS is caused by the absence of paternally expressed genes on chromosome 15q11-q13, due mainly to a paternal [...]

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