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News Alert

Top experts guide international effort in rare diseases research

Brussels, 29 February 2012

Chaired by the European Commission, the Executive Committee of the International Rare Diseases Research Consortium (IRDiRC) appointed today 31 class-leading experts to help guide its members' future research efforts. This brings IRDiRC one step closer to the initiative's objective of developing 200 new therapies for rare diseases and to be able to diagnose most of the currently known 6-8000 rare diseases by the year 2020.

The experts appointed today come from various fields including patients' organisations, academia and industry. They will serve on 3 scientific committees to advise the IRDiRC members on how to maximise the benefits of their investments in rare diseases research. Their recommendations will be crucial for the success of the initiative and ensure a better return on investment for the participating organisations.

Europe has taken a leading role in IRDiRC, the biggest collective rare diseases research effort world-wide. The initiative is a sign of hope for the 30 million Europeans who are affected by a rare disease and who all too often struggle to get medical attention and help they desperately need. For the European Union, being able to share resources and expertise with other organisations from around the world under the IRDiRC umbrella will add significant value to Europe's 430 million EUR investment in collaborative rare diseases research.


Rare diseases
A disease or disorder is defined as rare in Europe when it affects not more than 1 in every 2000 persons. Yet, because there are so many different rare diseases – between 6000 and 8000 – taken altogether they affect a significant share of the population. In the EU, as many as 30 million people suffer from a rare disease, many of them are children.

Most rare diseases have genetic origins whilst others are the result of infections, allergies and environmental causes. They are usually chronically debilitating or even life-threatening.

Pooling of efforts and creating synergies is a real success factor for rare diseases research, where resources are scarce and the relatively low number of patients in each Member State makes it difficult to gather enough knowledge and expertise in a specific disease to see a real impact. This lack of knowledge also makes it difficult for doctors to diagnose and identify the best treatment for rare diseases. 
Research on rare diseases presents remarkable interest for other health sectors: rare diseases can serve as models to better understand more common diseases. And overcoming the many hurdles to investigating rare diseases can help improve health research in other areas e.g. by developing models for personalised medicine approaches.

International Rare Diseases Research Consortium (IRDiRC)
The European Commission and the US National Institutes of Health launched this initiative in spring 2011.

It brings together organisations ready to invest, over a 5-year period, more than $10 million US dollar (7.6 million EUR) into research which contributes to its objectives.
The European Union will invest over 430 EUR million into this research area through the so-called Cooperation Programme, the part of FP7 dedicated to collaborative research, under the 'health' theme.

IRDiRC is picking up speed and growing rapidly. 23 organisations from Europe, North America and Australia are already part of it. More organisations from across the globe are expected to join the initiative.

The consortium will also rely on the collaboration with researchers, patients groups, industry associations and regulatory bodies.

More information


Michael Jennings  (+32 2 296 33 88)
Monika Wcislo  (+32 2 298 65 95)

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