‘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.
April 2nd (online)
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.
Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimise communications between parents and doctors.
This international symposium will cover all aspects of Congenital Disorders of Glycosylation and related disorders, including the discovery of novel types, the study of fundamental aspects of glycosylation, better understanding of the pathophysiology of the different types of CDG, new analytical procedures and diagnostic methods, development of therapies, clinical management and clinical trials, awareness and reach out to family associations.
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).
Rare Disease Day Verona | A weekend programme, planned by AISMME, starting with a webinar on February 26th at 17:30 to 19:00.
Rare Disease Day webinar presented by Freiburg Centre for Rare Diseases on 26th February 2021 from 15:00 - 17:15