Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimise communications between parents and doctors.
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.
The Manifesto invites the people of Europe to engage in building a health policy that contributes to the long-term sustainable development of the European Union. The Manifesto sets out a vision of a European Health Union (with goals, policies, measures, principles) developed by the signatories of the Manifesto.
A meeting on INTERNATIONAL REGISTRY OF COVID-19 IN PEOPLE WITH RARE DISEASES organised by Share4Rare will take place on Wednesday 9 December 2020 at 14:00 CET.
MetabERN agrees and endorses the principles of the manifesto for EU COVID-19 research when dealing with research results stemming from EU funded research grants related to COVID-19 on prevention (including vaccines), testing and treatment
Emergency situations are a major burden for many IEM-patients and their families. Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.
The IMI conect4children (c4c) consortium is pleased to announce that the first site is now open for the ‘Kawasaki Disease Coronary Artery Aneurysm Prevention trial (KD-CAAP)’ study as of 28 September 2020 at Great Ormond Street Hospital NHS Foundation Trust.
The Clinical Patient Management System (CPMS) was launched by the European Commission (Directorate-General for Health and Food Safety – DG SANTE) on November 20th 2017, as a web-based application aimed at supporting the European Reference Networks (ERNs) in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of EU Member States.
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