Emergency situations are a major burden for many patients suffering from Inherited Metabolic Disorders 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. This webinar aims to inform patients about the emegencyprotocol.net website, which offers a generator for emergency letters.
The team of Weber Shandwick, in collaboration with EU patient groups, trade associations and policy-makers has produced a set of 10 principles and actions to aid future policy and advocacy efforts across 3 key areas.
‘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).
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