EJPRD – ERN internal training and support program calls

EJP-RD has opened funding calls for training programs based on two main components: research mobility fellowship and research training workshops.

The aim of these programs is to fill the gap in the available education on rare diseases research by creating and implementing a comprehensive and cohesive program of education and empowerment for different target groups or stakeholders such as researches and young clinicians.

Submission for the fellowship is possible until 16th of March 2020. For the research training workshops, the deadline for submission is 2nd of March.

For more information, visit the website.

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e-ECE 2020

e-ECE 2020 is a fully digital congress, with the latest innovations in endocrine research and patient care. e-ECE will be held from 5-9 September 2020. The online congress will exist out of high quality lectures, symposia, Meet the Expert sessions, New Scientific Approaches and much more.

The virtual exhibition, ECE Hub sessions and satellite symposia will enable you to stay up to date with industry. There will also be plenty of opportunities to meet online, extend your network and spark discussions.


Event summary

Evente-ECE 2020
DateSeptember 5th - September 9th, 2020
OrganisationThe European Society of Endocrinology
WebsiteVisit event website
RegistrationRegistration is closed



Bone Curriculum Symposium

This year the Bone Curriculum Symposium will take place at Het Pand in Ghent, Belgium on 12 & 13 March 2020.

The bone curriculum serves as a lecture cycle on bone which is covered within three consecutive yearly symposia. The scope of the bone curriculum is to provide high quality continuous education for clinicians of all specialities interested in, seeing or treating patients with osteoporosis and / or bone diseases and is also a structured educational programme for trainees in rheumatology and other specialities looking at bone and calcium – phosphate metabolism disorders.

Event summary

EventBone Curriculum Symposium
DateMarch 12th - March 13th, 2020
LocationGhent, Belgium
OrganisationKBVR/SRBR Osteoporosis and Fracture Prevention Group
WebsiteVisit event website
RegistrationRegistration is closed

Endo-ERN webinar: Turner Syndrome Guideline & the patient perspective

On Thursday February 13th at 15:00 – 16:00 CET an Endo-ERN webinar about “Turner Syndrome Guideline & the patient perspective” is organised.

The webinar will be held by Prof. Claus Gravholt, MD, PhD, Aarhus University Hospital Denmark and Arlene Smyth, mother of a patient, Executive Officer of the Turner Syndrome Support Society and Endo-ERN patient representative.

Claus Gravholt will give a short description of the new international guideline concerning health and general follow-up of adult women with Turner syndrome. He will focus on the medical health issues, as well as the neurocognitive challenges that many women with TS face during adulthood and about the need for centralized care in all countries, as well as the interdisciplinarity which is needed. Furthermore, Arlene Smyth will be sharing the patient perspective side. Continue reading

International EJP-RD Course

**This workshop is now online with a web-conferencing format. The program has been adapted.**

The International Course Training on strategies to foster solutions of undiagnosed rare disease cases is part of a series of training activities proposed by the EJP RD and will take place on 27-29 April 2020 in Rome, Italy.

Several initiatives have been undertaken at national and international level for undiagnosed rare diseases aimed at identifying clinical pathways and innovative methods to reach diagnosis. This course will illustrate methodologies and tools already used internationally and will provide participants with useful examples for the resolution of undiagnosed cases.

The course will provide participants, through the presentation of sample use cases that have long eluded diagnosis, with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed RD cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.

Event summary

EventInternational EJP-RD Course
DateApril 27th - April 29th, 2020
WebsiteVisit event website

Lecture by Prof. Thomas Danne in January 2020

We are very pleased to invite you for the lecture of Professor Thomas Danne on Wednesday, 15 January 2020 at the LUMC, The Netherlands.

The theme of lecture is Time in range, its use and implication in the treatment of (children with) type 1 diabetes. 

The duration will be 1 hour and accreditation has been requested for 1 point. The lecture is open and free for everyone who is interested in this subject.

Click here for the invitation.

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EJP RD Internal Call for Proposals 2019 & Joint Transnational Call 2020 (JTC2020)

Two Preliminary Announcements from EJPRD:

The Clinical Trials Methodology Demonstration Projects Call is now open. It aims to show the usability and capability of the innovative statistical methodologies for clinical trials in rare diseases, which have not been demonstrated on existing data for specific rare disease clinical trials yet. For more information about this call, visit the website.

Call for Proposals 2020 of the EJP RD JTC2020 is online! Topic is: Pre-clinical research to develop effective therapies for rare diseases. There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals. The call is scheduled to open on December 13, 2019.

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Rare Diseases Symposium: Cross-border research in rare diseases

European cooperation is of great importance in tackling rare diseases. Conducting joint research offers opportunities for care improvement for patients with a rare disease. Cross-border research was the central topic of the annual Rare Diseases Symposium on November 6th in the LUMC

During the symposium, both internal and external attendees were given an update on international developments within the field of rare diseases. Prof. Alberto Pereira gave an introduction on research within the European Reference Networks (ERNs) and the European Joint Programme on Rare Diseases (EJP RD). The EJP RD actions are organized within major pillars: collaborative research funding, coordinated access to data & services, capacity building & empowerment, and accelerating translation of research & therapy development.

Specific aspects of EJP RD were discussed in more detail: disease registries (prof. Faisal Ahmed), financing opportunities (dr. Sonja van Weely, ZonMw), and the EJP RD virtual platform (dr. Marco Roos). That successful international collaboration can significantly improve healthcare was nicely illustrated by prof. Maarten Vermeer. He shared his experiences with European and worldwide research within the field of Cutaneous Lymphoma.

Johan de Graaf also shared his experiences with cross-border research, from a patient-representative point of view. For each ERN disease grouping, there is a European Patient Advocacy Group (ePAG). Johan is ePAG for Endo-ERN and involved in several international rare disease initiatives. The symposium was concluded with an overview of EU research grant opportunities (dr. Pieter de Koning).

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