EURORDIS appointed to governing bodies of International Rare Disease Research Consortium
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