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
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.”
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
Rare Disease Community | Tomasz Grybek
Rare Disease Community | Tomasz Grybek
Together4RD x ERDERA: Launch of the Toolkit for Public-Private Partnerships in Rare Disease Research
Rare Disease Community | Dorica Dan
Rare Disease Community | Tomasz Grybek
Rare Disease Community | Alexandre Méjat
Rare Disease Community | Tomasz Grybek
ERDERA Clinical Research Network Jamboree: Including underrepresented countries into innovative diagnostic research
A first in personalised medicine: CRISPR treatment for a baby sparks new debate on rare disease therapies
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
