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Endo-ERN contribution at e-ECE 2020
We look back at a successful contribution of Endo-ERN during e-ECE 2020.
If you missed our Scientific symposium with presentations of our Endo-ERN coordinator Alberto Pereira, Natasha Appelman (EuRR-Bone), Fasial Ahmed (EuRRECa), Jo Blair & Agnès Linglart or the eposter from Susan Webb about "Patient perception and views on quality of care for rare endocrine diseases" Result of an Endo-ERN survey.
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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.
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Recording Endo-ERN webinars
The recording of MTG3 webinar by Robert Semple about"Monogenic insulin resistance – diagnosis, treatment, and insights for common disease" and the recording of MTG5 by Anita Hokken about "How multidisciplinary care and growth hormone treatment can improve the health of children with Prader-Willi syndrome" are now available for viewing at your own convenience.
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All-ePAG Online meeting
Under normal circumstances Eurordis organises a meeting for ERN ePAGs in the margins of either the ECRD or Eurordis Membership meeting to be organised in May. Due to the Covid crisis this event has been changed into an online meeting on November 5 and 6. The objective of the second day is to share and learn from colleague ePAGs on how to engage with your patient community to bring the voice of patients to the ERNs. Participants can choose from 4 different best practices and Endo-ERN will be represented by Johan de Graaf who will be talking about the recent survey on unmet need in endocrine medical research of Work Package 3 (Research and Science).
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Information on planned medical treatment abroad
All citizens of the European Union have the right to cross-border healthcare. Rules are provided for facilitating the access to safe and high-quality healthcare in not only ones own country, but within another EU member state as well. The EU promotes cooperation on healthcare between Member States, in full respect of national competencies in organising and delivering healthcare.
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Second call for ERN Research Mobility Fellowship is now open!
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.
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Extended deadline for ERN Reseach Training Workshop call
The 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.
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EJP RD General Assembly
From 14 - 17 September 2020, the EJP RD General Assembly took place, fully online.
The program of this year was very rich and tailored to the specific interests of the RD community. The coordinator of Endo-ERN Alberto Pereira gave a presentation about
“ERICA – coordination and support action for ERN research strategy.
Furthermore, the program contained workshops focused on:
improving the understanding of ongoing EJP RD funding mechanisms to increase quality of their applications
strengthening the capacity building to develop their new findings towards clinical settings
training them in the use of systems to diagnose difficult RD cases with exome/genome data
introducing novel and innovative methodologies applied to RD clinical trials
explaining EJP RD considerations on interoperability to make registry interoperable and FAIR
In addition, interactive sessions took place to facilitate the acquisitions of practical skills, such as 1) guidance diagrams on GDPR research date, ethical use and legal interpretation of medical research; 2) acess to relevant resources for research needs on the EJP RD Virtual Platform. Special attention was dedicated to “education” on RD research with two interactive sessions on 1) how to fill the gaps and implement programs for researchers and young clinicians; 2) developing the RD e-learning scheme to align all actions.
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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 how to register can be found on the website, and CME credits will be applied for.
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Endo-ERN Covid-19-webpage
Endo-ERN has created a page dedicated to Covid-19, especially for patients with rare endocrine conditions who need information, and clinicians treating COVID-19 patients with rare endocrine conditions. This page is continuously updated with the most relevant information from EU countries and European initiatives. Already 12 countries provided relevant information. Interested? Click here!
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