29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of (patient) organisations from countries and regions all over the world will hold awareness-raising activities.
In Padova, Italy, a meeting regarding research about rare diseases is organized.
The programme can be found here. MTG 3 Adult chair Pietro Maffei is part of the Scientific Committee.
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.
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.
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 [...]
**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 Endo-ERN November & December newsletter is out now! Read about the first Endo-ERN Guideline meeting in Leiden, scheduled webinars in 2020 and the Rare Endocrine Registries Workshop in Glasgow.
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.
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 [...]
The Endo-ERN October newsletter is out now! Read about the Endo-ERN webinar Alström Syndrome on 25 November, 5 new Affiliated Partners joined Endo-ERN, upcoming events and much more!
