News

European Reference Networks (ERNs) were founded on the principle that many rare disease (RD) issues are pan-European and any single Member State cannot solve them alone.

EJP RD pre-announced the upcoming opening of the call for Research Mobility Fellowships on the 15th of March, which aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

Istituto Superiore di Sanità (ISS), in collaboration with EJP RD, have organised an international training course regarding undiagnosed rare diseases. 2 – 14 April 2021. This workshop is online with a web-conferencing format.

EJPRD Rare Disease Day video: contributors answer the web’s most search questions about rare diseases in a new video (subtitles available).

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 organised on the 25th of January 2021. The meeting will take place online from 15:00 to 18:30.

New manifesto outlines five key goals for establishing a European Health Union to enhance healthcare solidarity and patient protection.

MetabERN endorses open-access principles for EU-funded COVID-19 research to ensure rapid sharing of prevention and treatment findings.

First European trial site opens at Great Ormond Street Hospital to study prevention of coronary artery aneurysms in Kawasaki Disease.

MetabERN releases educational videos explaining the Clinical Patient Management System features and data protection compliance.