About us

IRDiRC is a consortium of research funding agencies and interested parties acting to accelerate research through collaborations

Objective 2020: 200 new therapies

Follow the progress towards developing and authorizing 200 new medicinal products to treat rare diseases by the year 2020.

Objective 2020: identify all genes

Follow the progress towards developing a diagnostic test to identify most rare diseases by the year 2020.

“IRDiRC Recognized Resources”

A label to highlight key resources to accelerate research on rare diseases. Access the application form for “IRDiRC Recognized Resource”.

State of Play of Research Report

Read the analysis by IRDiRC of recent major research initiatives and outcomes, and of identified trends likely to shape the future

Matchmaker Exchange Task Force


IRDiRC-Global Alliance Matchmaker Exchange aims to provide data sharing tools to match unsolved genome/exome sequence cases

Patient Centered Outcome Measures Task Force

The development and adoption of patient-relevant and -reported outcome measures are instrumental in accelerating R&D

Small Population Clinical Trials Task Force

Collaborative effort on adaptive design, statistical methods and acceptability of new methods in small population clinical trials

Automatable Data and Access Task Force

To make the most of clinical data sources worldwide, accessing patient consent is crucial to share data and improve research participation.

Data Mining and Repurposing Task Force

Exploiting existing data and knowledge is essential to identify new therapeutic targets and to repurpose drugs.

International Consortium of Human Phenotype Ontologies

ICHPT: Core set of terms to be incorporated in any Human Phenotype Terminology intended to describe rare diseases.

Privacy-Preserving Record
Linkage (PPRL)

PPRL aims to develop a policy for the generation of participant-specific identifiers across projects without revealing the participant’s identity.