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 »
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 »
Rare Disease Day webinar presented by Freiburg Centre for Rare Diseases on 26th February 2021 from 15:00 – 17:15.
Rare Disease Day Freiburg | Webinar | 26 February 2021 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 »
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 »
MPS Expert Webinar | GENE THERAPY CTs FOR MPS TYPE III July 21th 2021.
MPS Expert Webinar | GENE THERAPY CTs FOR MPS TYPE III 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 »
Enthusiastic and ambitious Assistant Professor need at Radboud UMC to perform preclinical therapeutic studies for inherited neurometabolic diseases.
Assistant Professor ‘Preclinical therapies for inherited neurometabolic diseases’ Read More »
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