The EJPRD Rare Disease Day Video is online!
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 »
News
innovation projects in clinical trials methodologies
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 »
Manifesto for a European Health Union
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 »
MANIFESTO FOR EU COVID-19 RESEARCH
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 »
Generic Emergency Protocol
MetabERN launches an online emergency protocol generator for patients with fatty acid oxidation and glycogen storage disorders.
Generic Emergency Protocol Read More »
Kawasaki Disease Coronary Artery Aneurysm Prevention Trial
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 »
Clinical Patient Management System (CPMS) | New Videos
MetabERN releases educational videos explaining the Clinical Patient Management System features and data protection compliance.
Clinical Patient Management System (CPMS) | New Videos Read More »
COVID-19 Recommendations for all Rare IMD Patients and Caregivers
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 »
European Joint Programme on Rare Diseases | Calls and Training Courses
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 »
IRDIRC Orphan Drug Development Guidebook
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 »
New Free-to-View Live Webinars | May – June 2020
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 »
World Congenital Disorders of Glycosylation (CDG) Day
May 16th is the World Congenital Disorders of Glycosylation (CDG) Day. The worldwide CDG community joins efforts around this day to put together global awareness and education.
World Congenital Disorders of Glycosylation (CDG) Day Read More »
