News & Updates
“Data is the fuel of ERDERA’s mission to enhance our insights in rare diseases, to expedite diagnosis, and to find new treatments”
ERDERA interviews Ronald Cornet
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 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.”
Join ERDERA’s Open Session on 30 October and get inspired by leading voices in rare disease research
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
Training for Resources joining the Rare Diseases Virtual Platform
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
Triplet repeat expansion project sets benchmark for public-private collaboration
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
