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 here.

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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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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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