International Rare Diseases Research Consortium (IRDiRC)

  • Description
  • Goals

    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.

    Back­ground /​His­tory

    • 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 20132014.

    « Let­ters of intent » con­cern­ing IRDiRC mem­ber­ship must be signed by the autho­riz­ing offi­cial com­mit­ting the research funds, and the let­ter should be addressed to contact@​irdirc.​org. A tem­plate let­ter of intent is available.


    Phone +33.1.565.381-37
    Location ,
    Address Rue Didot 96

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