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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Second call for ERN Research Mobility Fellowship to come up soon!

As part of its educational activities, EJP RD runs a Research Mobility Fellowship Programme dedicated to young researchers in the European Reference Networks (ERNs). PhD students and medical doctors in training from ERN member and Affiliated Partner institutions can apply for funding of short-term (1 to 3 months) training visits at another ERN center outside their country of residence. The aim of the programme is to foster the acquisition of skills and knowledge relevant to rare disease research. Both clinical and translational research projects are eligible for funding.

The first round of applications has been concluded successfully in July 2020. [...]

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1st European Thyroid Cancer Workshop

Thyroid Cancer is a rare disease that requires an international and coordinated collaborative approach. Currently several European networks are involved in propagating patient care, research and education in the field of thyroid cancer. For reasons of quality and efficiency, these different organizations aim to improve their coordination and collaboration with regard to thyroid cancer.

As part of this collaborative approach, we will jointly organize the first European Thyroid Cancer Workshop. This workshop will be held digitally on November 13th and 20th, between 5pm and 7pm, and is open to all experts involved in thyroid cancer. Details of the program and [...]

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1st European Thyroid Cancer Workshop

Thyroid Cancer is a rare disease that requires an international and coordinated collaborative approach. Currently several European networks are involved in propagating patient care, research and education in the field of thyroid cancer. For reasons of quality and efficiency, these different organizations aim to improve their coordination and collaboration with regard to thyroid cancer.

As part of this collaborative approach, we will jointly organize the first European Thyroid Cancer Workshop. This workshop will be held digitally on November 13th and 20th, between 5pm and 7pm, and is open to all experts involved in thyroid cancer. Details of the program and [...]

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EJP RD – Second Research Training Workshop call is now open

EJP RD – Second Research Training Workshop call is now open

The call is open from the 31st August until 28th of September 2020

The goal of the workshops is to train researchers and clinicians affiliated to ERN-Full Members or – Affiliated Partners in relevant topics on rare diseases research. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.

The workshops will be delivered as two-day events. Topics can be proposed by clinicians/investigators affiliated to ERN-institutions or [...]

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Endo-ERN General Assembly 2021

The virtual 5th Endo-ERN General Assembly will be held on Tuesday & Wednesday 13 & 14th of April 2021.

Tuesday 13th of April 2021

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 14th of April 2021

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

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