Some exciting news to share! MetabERN and Medics4RareDiseases are eager to combine their efforts, establishing future collaboration.
Medics4RareDiseases and MetabERN to announce a mutual collaboration Read More »
The IEMbase announced the creation of the IEMbase mobile app version 1.0, which is now available for Android and Apple devices.
IEMbase mobile app version 1.0 is live Read More »
The programme is beginning. The ERN Exchange Programme aims at harmonising specific knowledge within the ERNs and reducing gaps in expertise.
ERN Exchange programme – knowledge sharing among ERN members Read More »
An emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.
EMERGENCY PROTOCOLS FOR PATIENTS WITH FAOD OR GSD | 22 JUNE 2021 Read More »
Weber Shandwick, in collaboration with EU patient groups, trade associations and policy-makers has produced a set of 10 principles and actions.
10 Principles for Greater Patient Empowerment Read More »
‘Un Amico Raro’, the special episode of the animated tv series “Leo da Vinci” broadcast on Rai Ragazzi, depicts the story of a young kid living in the 16th century suffering from Anderson-Fabry disease.
‘Un Amico Raro’ – An animated cartoon to explain the Anderson-Fabry disease Read More »
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.
European Reference Networks: challenges and opportunities Read More »
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.
ERN Research Mobility Fellowship | 15 March 2021 Read More »
Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimise communications between parents and doctors.
Generic Emergency Protocol: Feedback Needed Read More »
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.
Training Course to Foster Solutions of Undiagnosed Rare Disease Cases Read More »
EJPRD Rare Disease Day video: contributors answer the web’s most search questions about rare diseases in a new video (subtitles available).
The EJPRD Rare Disease Day Video is online! Read More »
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.
innovation projects in clinical trials methodologies Read More »
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