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.
A number of grand challenges are being addressed through collaborative actions to reach these 2020 goals such as:
- establishing and providing access to harmonized data and samples,
- performing the molecular and clinical characterization of rare diseases,
- boosting translational, preclinical and clinical research,
- and streamlining ethical and regulatory procedures.
- 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. Indeed, for many diseases, there are very limited amount of researchers and resources available. However, concerted efforts to organize the rare disease research community and funding were emerging in several countries but so far, international coordination was rather limited.
- The idea to establish IRDiRC came during a meeting between Dr. Ruxandra Dragha-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 October 2011 in Montréal (Canada), the third preparatory workshop gathered around 100 participants representing public and private funding organizations, scientists, regulators, industry and patient groups. It focused on continuous efforts to develop common scientific and policy frameworks to guide the activities of the participating IRDiRC members.
- In September 2012, Dr. Paul Lasko, Scientific Director of the Canadian Institutes of Health Research (CIHR) Institute of Genetics, was selected as the next Chair of the executive committee, starting in 2013.
- In April 2013, the first IRDiRC conference took place in Dublin, Ireland. Researchers, clinicians, patient groups and representatives of public and private organisations met to assess the three-year old work of IRDiRC, which is dedicated to finding treatments and diagnoses for rare diseases.
Become a member
To be considered as an IRDiRC funding member, the funding body/organization should invest a minimum of 10 million USD over 5 years in research projects/programs contributing towards IRDiRC objectives.
Investments from 1 Jan 2010 contributing to IRDiRC objectives will be considered for membership in the Executive Committee.
Before the end of the 5 year period of investments, renewed investments should take place.
The level and length of such renewed investments should be reviewed by the IRDiRC Executive Committee in 2013⁄2014.
« Letters of intent » concerning IRDiRC membership must be signed by the authorizing official committing the research funds, and the letter should be addressed to email@example.com. A template letter of intent is available.