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

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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.

This entry was posted in General.

Endo-ERN webinar: Wolfram syndrome

This webinar will be on October 7th, 2020

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 common presentations, a multidisciplinary approach to management, new advances in our understanding of the pathophysiology, and current research for therapies.

Webinar summary

WebinarWolfram syndrome
DateOctober 7th, 2020
Time15:00 – 16:00 hr
SpeakerTimothy Barrett
RegistrationRegister for webinar
MTG

Endo-ERN webinar: Prader-Willi syndrome

This webinar took place on September 29th, 2020

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 deletion or a maternal disomy.

Growth hormone (GH) treatment in children with PWS improves body composition, physical strength, energy expenditure and growth and has a positive effect on cognitive functioning. The most important reason for treating these children with GH is to optimize their body composition; without GH treatment, body composition deteriorates over time, in many cases leading to morbid obesity.

This webinar presents the changing clinical characteristics of PWS during childhood and how the combination of multidiciplinary care, a healthy life style and GH treatment can improve the health and life of children with PWS .

Webinar summary

WebinarPrader-Willi syndrome
DateSeptember 29th, 2020
Time17:00 – 18:00 hr
SpeakersAnita Hokken
RegistrationRegistration is closed
MTG

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

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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. Out of 16 applications received, the Scientific Evaluation Committee selected six outstanding applications by fellows from Belgium, Denmark, The Netherlands, Slovenia, Spain and the UK. The exchange visits will involve research units from the following ERNs: ERN-RND, EURO-NMD, ERKNet, eUROGEN, ERNICA and ERN-Eye.
All proposals were evaluated of the Scientific Evaluation Committee (SEC) composed of three WP17 leaders, three independent external scientific experts and one representative of the EJP RD office.

For the next programme call, EJP RD encourages junior physicians and PhD students to apply to this prestigious programme and add this exciting and unique experience to their professional education path and background.

This second call will open on 1st October 2020. All relevant information will be published on the EJP RD website

This entry was posted in General.

1st European Thyroid Cancer Workshop

This workshop will be on November 20th, 2020

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 how to register can be found on the website, and CME credits will be applied for.

Workshop summary

Workshop1st European Thyroid Cancer Workshop
DateNovember 20th, 2020
Time17:00 – 19:00 hr
WebsiteVisit workshop website
RegistrationRegister for workshop
MTG

1st European Thyroid Cancer Workshop

This workshop will be on November 13th, 2020

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 how to register can be found on the website, and CME credits will be applied for.

Workshop summary

Workshop1st European Thyroid Cancer Workshop
DateNovember 13th, 2020
Time17:00 – 19:00 hr
WebsiteVisit workshop website
RegistrationRegister for workshop
MTG

EJP RD – Second Research Training Workshop call is now open

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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 EJP RD beneficiaries. As of 2021, there will be two deadlines for workshop topic applications per year, in January and June.
Topics will be selected taking into consideration several elements such as:

• Addressing cross-cutting issues relevant for ERNs
• Multidisciplinary topics
• Fostering collaboration (within and between ERNs)
• No overlap with other EJP RD training activities
• Relevance of the topic for the ERN(s)
• Benefits for the RD community
• Appropriate training methodology

The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. The costs for the workshop organization will be covered up to a limit of € 25000,00. These include the costs and fees typically charged by the event venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers (if envisaged).

The second call for Research Mobility Fellowships will open October 1st, 2020.

For more information, visit the website

This entry was posted in General.

Endo-ERN General Assembly 2021

This event will be from April 13th to April 14th, 2021

The Endo-ERN General Assembly 2021 will be held on Tuesday 13 and Wednesday 14 April in Milan/Verbania, Italy (same location as planned for the 3rd GA). Prior to the General Assembly EuRRECa will hold their annual meeting.

If the COVID-19 situation at that time doesn’t allow to hold a face to face meeting, we will of course try to find flexible and suitable alternatives. Continue reading →