A EURORDIS position paper: Key Principles for Newborn Screening

For the first time, EURORDIS, alongside its Council of National Alliances, Council of European Federations and its members, have set out 11 Key Principles to support a harmonised European approach to Newborn Screening. The vast inequalities across Europe, coupled with technological and scientific advances highlight the urgent need to move forward from the status quo. The […]

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EMA Training Webinars for use of CTIS

The way clinical trials are conducted in the EU will undergo a major change when the Clinical Trial Regulation (Regulation (EU) No 536/2014) comes into application. The Regulation harmonises the assessment and supervision processes for clinical trials throughout the EU, via a Clinical Trials Information System (CTIS). CTIS will contain the centralised EU portal and […]

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Register to the Information Webinar for the JTC2021

The EJP RD is glad to invite you to the information webinar organised for potential applicants to the Joint Transnational Call 2021 on “Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease”.  The webinar will take place online on February 2nd, 2021 3:00pm – 4:30pm CET.  REGISTER HERE All interested […]

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EURORDIS Photo Award 2021

You don’t have any plans for this weekend? Take a camera with you and send us a picture that captures how is daily life when you live with a rare disease! #EURORDISAwards2021   Send your picture here: https://blackpearl.eurordis.org/photo-award/

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EJP RD Webinar – RaDiCo

EJP RD is organizing webinars to showcase the resources involved in the programme and address the following: (1) what is this resource, and how is it related to EJP RD ? (2) How can this resource be helpful for clinicians / researchers involved in rare disease studies? and (3) how can this resource be used by the audience?  The […]

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EJP RD INFORMATION/NETWORKING EVENT FOR THE INTERNAL CALL FOR INNOVATION PROJECTS IN CLINICAL TRIALS METHODOLOGIES IN LIMITED POPULATIONS APPLICANTS

In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close on 3rd of March 2021, an “Information/Networking Event” will be organized on the 25th of January 2021. The meeting will take place online from 15:00 to 18:30.   All interested applicants are invited to […]

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