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EU To Provide EUR 144 Mln. For New Research On Rare Diseases

The European Commission on Thursday announced EUR 144 million of new funding for 26 research projects on rare diseases. The bloc said on Rare Disease Day 2013 that the projects would help improve the lives of some of the 30 million Europeans suffering from a rare disease.

The selected projects bring together over 300 participants from 29 countries in Europe and beyond, including teams from leading academic institutions, SMEs and patients' groups. The goal is to pool resources and work beyond borders, to get a better understanding of rare diseases and find adequate treatments.

"Most rare diseases affect children and most of them are devastating genetic disorders resulting in greatly reduced quality of life and premature death. We hope that these new research projects will bring patients, their families and health professionals closer to a cure and support them in their daily battle with disease," said Maire Geoghegan-Quinn, European Commissioner for Research, Innovation & Science.

The 26 new projects cover a broad spectrum of rare diseases such as cardiovascular, metabolic and immunological disorders. They are aimed at developing substances that may become new or improved therapies for patients, understanding better the diseases' origins and mechanisms, better diagnosing rare diseases as well as improving the management of rare diseases in hospital and healthcare settings.

Many of the new projects will contribute to the International Rare Diseases Research Consortium (IRDiRC), the biggest collective rare diseases research effort world-wide. Initiated by the European Commission along with its national and international partners, the key objective of the research effort is to deliver 200 new therapies for rare diseases by 2020 and the means to diagnose most of them.

The new projects will bring the number of EU-funded collaborative research projects related to rare diseases to close to 100 over the last six years. Altogether, they represent an investment of almost EUR 500 million.

A disease or disorder is defined as rare in Europe when it affects not more than one in every 2,000 persons. Yet, because there are so many different rare diseases - between 6,000 and 8,000 - 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.

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