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 »
New manifesto outlines five key goals for establishing a European Health Union to enhance healthcare solidarity and patient protection.
Manifesto for a European Health Union Read More »
MetabERN endorses open-access principles for EU-funded COVID-19 research to ensure rapid sharing of prevention and treatment findings.
MANIFESTO FOR EU COVID-19 RESEARCH Read More »
MetabERN launches an online emergency protocol generator for patients with fatty acid oxidation and glycogen storage disorders.
Generic Emergency Protocol Read More »
First European trial site opens at Great Ormond Street Hospital to study prevention of coronary artery aneurysms in Kawasaki Disease.
Kawasaki Disease Coronary Artery Aneurysm Prevention Trial Read More »
MetabERN releases educational videos explaining the Clinical Patient Management System features and data protection compliance.
Clinical Patient Management System (CPMS) | New Videos Read More »
The COVID-19 pandemic is testing the resilience of robust health systems around the world. This may be impacting you in many different ways, such as creating additional anxiety or exacerbating other medical or therapy issues related to your Inherited Metabolic Diseases (IMD).
COVID-19 Recommendations for all Rare IMD Patients and Caregivers Read More »
Are you interested in calls and training courses of the European Joint Programme on Rare Diseases? Click here to discover what the EJPRD are planning.
European Joint Programme on Rare Diseases | Calls and Training Courses Read More »
The commentary ‘Boosting delivery of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook’ has been published in Nature Reviews
IRDIRC Orphan Drug Development Guidebook Read More »
Enhancing the Quality of Life of Persons Affected by Mucopolysaccharide Across Europe. By taking a multidisciplinary healthcare team approach we can better understand how to work with colleagues to support patients with MPS with their everyday healthcare needs, as well as by having a better understanding of the latest treatment options.
New Free-to-View Live Webinars | May – June 2020 Read More »
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