The International Rare Diseases Research Consortium (IRDiRC) teams up researchers and organizations investing in rare diseases research in order to achieve two main objectives by the year 2020, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases.

Individual researchers and consortia have been studying rare diseases for several decades. However, the rare disease research community was very fragmented mainly due to the large heterogeneity of rare diseases. The idea to establish IRDiRC came during a meeting between Dr. Ruxandra Draghia-Akli (European Commission) and Dr. Francis Collins (NIH) in 2009. Their main objective was to accelerate medical breakthroughs for people affected by rare diseases by establishing a network of research funders. In October 2010, the European Commission and the US National Institute of Health announced in the first preparatory workshop in Reykjavik (Iceland) their intention to join forces on rare diseases research. The two institutions planned to coordinate their research funding on rare diseases and to make major investments in this research field in the years to come.

In April 2011, IRDiRC was officially established and launched during the second preparatory workshop in Bethesda (USA). The group of funding agencies representatives agreed to have an Interim Executive Committee until the end of 2012. The group chose Dr. Ruxandra Draghia-Akli as interim Chair.

In April 2013, and March 2015 the first and the second IRDiRC conferences took place in Dublin and in Shenzhen respectively.

The 3rd conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France, at the conference center of Université Pierre et Marie Curie (UPMC) Sorbonne Universités, Jussieu.

Five years have passed since the initial launch of IRDiRC in 2011 and considerable advances have been made in rare diseases research. IRDiRC 2017 conference presents a unique opportunity to reflect upon this progress, confront barriers, and together, form new collaborations to take on challenges posed by rare diseases.

All stakeholders – investigators, policy makers, opinion leaders, critical thinkers, young researchers, patient advocates and industry members alike – active in the area of rare diseases from across the globe are invited by conference organizers to celebrate achievements in the field, identify future milestones and goals, and work toward bringing diagnoses and therapies to all rare disease patients.

To reach out the Congress Planning Committee please click here

The congress schedule at a glance

For registration please click here

Dr. Shima Naghavi, Director of International Affairs