EURORDIS appointed to governing bodies of International Rare Disease Research Consortium

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European rare disease patients will be represented in the governing bodies of the International Rare Disease Research Consortium (IRDiRC). EURORDIS Board Member, Ms Béatrice de Montleau and EURORDIS Therapeutic Development Director Dr Maria Mavris have been appointed to the Executive Committee and the Therapies Scientific Committee, respectively.
To date over 30 class-leading experts have been elected to help guide the Consortium members' future research efforts. The three Scientific Committees - encompassing Diagnostics, Therapies and Interdisciplinary aspects - will advise the Executive Committee, who will in turn decide on priorities for future research and development investments.
The European Commission and the US National Institutes of Health launched this initiative in spring 2011 to foster international collaboration in rare diseases research and achieve two main objectives: deliver 200 new therapies for rare diseases and means to diagnose most rare diseases by the year 2020. EURORDIS has been involved in the initiative since its onset and will collaborate with the National Organization for Rare Disorders (NORD) and many other partners and scientific advisors for an optimal therapeutics research agenda for patients.
IRDiRC brings together organisations ready to invest, over a 5-year period, more than 10 million euros into research which contributes to its objectives. More than 20 public research authorities and private organisations from Europe, North America and Australia are already part of the Consortium and many more from across the globe are expected to join (see list of committed members). The Consortium will also rely on collaboration with researchers, patients groups, industry associations and regulatory bodies.
The next Executive Committee meeting is planned to take place in September 2012 in Paris, France. The most important outcome expected by then, is a comprehensive policy agenda on which all future policy of the Consortium, including the funding policy of participating partners, will be based.
Find more information on the European Commission’s DG Research and Innovation website
Page created: 27/04/2012
Page last updated: 02/05/2012

International Rare Diseases Research Consortium
(IRDiRC)

In the Spotlight

Members of IRDiRC Scientific Committes
appointed, 29/02/2012.

Read News Alert: Top experts guide international effort in rare diseases research. .

Introduction

Maximising scarce resources and coordinating research efforts are key elements for success in the rare diseases field. Worldwide sharing of information, data and samples to boost research is currently hampered by the absence of an exhaustive rare disease classification, standard terms of reference and common ontologies, as well as harmonised regulatory requirements.
The International Rare Diseases Research Consortium (IRDiRC) was launched in April 2011 to foster international collaboration in rare diseases research. IRDiRC will team up researchers and organisations investing in rare diseases research in order to achieve two main objectives, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases by the year 2020.

For any questions or queries with regard to IRDiRC, please use the following e-mail address: RTD-IRDIRC [at] ec.europa.eu

International Rare Diseases Research Consortium (IRDiRC) - Rare Diseases - Medical Research - Health - Research - European Commission