Latest
Open Academy Schools 2026: applications open 8 September 2025
A new edition of “Navigating Rare Disease Research: Data, Ethics and AI in Europe” will follow suit
Exploring consultancy needs for rare disease research
Mapping needs leads to tailored solutions
Patients as Equal Partners – ERDERA’s PPIE Vision Echoes in Brussels
“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”
Erdera interviews Tomasz Grybek, patient representative and caregiver
“The notion that public-private collaboration is inherently problematic doesn’t align with current realities. Not only is it possible—it is necessary, beneficial, and more straightforward than many assume.”
New Toolkit Strengthens Collaboration Between ERNs and Industry
Scientific Coordinator Daria Julkowska contributes to Science Magazine and Ipsen Foundation’s high-level webinar on rare disease research collaboration
Open Academy Schools 2026: applications open 8 September 2025
A new edition of “Navigating Rare Disease Research: Data, Ethics and AI in Europe” will follow suit
Exploring consultancy needs for rare disease research
Mapping needs leads to tailored solutions
Patients as Equal Partners – ERDERA’s PPIE Vision Echoes in Brussels
“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”
Erdera interviews Tomasz Grybek, patient representative and caregiver
“The notion that public-private collaboration is inherently problematic doesn’t align with current realities. Not only is it possible—it is necessary, beneficial, and more straightforward than many assume.”
New Toolkit Strengthens Collaboration Between ERNs and Industry
Scientific Coordinator Daria Julkowska contributes to Science Magazine and Ipsen Foundation’s high-level webinar on rare disease research collaboration
Publication
Under the banner “Bridging Research and Care for Patients,” discussions delved into targeted newborn screening programs, advanced clinical trials, and innovative translational reçsearch platforms.
Short Guide on Patient Partnerships in Rare Disease Research Projects – Basic, Pre-clinical, Translational & Social
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Discussions delved into targeted newborn screening programs, advanced clinical trials, and innovative translational reçsearch platforms.
RE(ACT) Congress and IRDiRC Conference 2025
Welcome to the pinnacle event in rare diseases research – the RE(ACT) Congress and IRDiRC Conference 2025, held jointly by the BLACKSW
