EU: 144M Euros in New Funds for Rare Disease Research

March 13, 2013

The European Commission has announced 144 million euros-worth of new funding for 26 research projects on rare diseases, for which there are around 30 million patients in the European Union (EU).

The selected projects bring together over 300 participants from 29 countries in Europe and beyond, including teams from leading academic institutions, small and medium-sized enterprises (SMEs) and patient groups, with the goal of pooling resources and working beyond borders to get a better understanding of rare diseases and discover effective treatments.

Announcing the new funding, Maire Geoghegan-Quinn, the European Commissioner for Research, Innovation and Science, pointed out that 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,” she said.

The 26 new projects cover a broad spectrum of rare diseases such as cardiovascular, metabolic and immunological disorders. They will aim to: develop substances that may become new or improved therapies for patients, better understand the diseases’ origins and mechanisms, better diagnose rare diseases and improve the management of rare diseases in hospital and healthcare settings.

The teams will work on a variety of challenges, including: a new “bioartificial” liver support system to treat acute liver failure; powerful data processing operations to develop novel diagnostic tools, biomarkers and screening strategies for therapeutic agents against rare kidney diseases; and the clinical development of a drug to treat alkaptonuria, a genetic disorder which leads to a severe and early-onset form of arthritis, heart disease and disability for which there is currently no effective treatment.

Many of the new projects will contribute to the International Rare Diseases Research Consortium (IRDiRC), the biggest collective rare-diseases research effort worldwide. Initiated by the European Commission in April 2011 with national and international partners, the Consortium’s key objective is to deliver, by 2020, 20 new therapies for rare diseases 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, representing a total investment of almost 500 million euros.

In late January, the EU announced new funding of 38 million euros, under the IRDiRC, for research towards new treatments and the development of a central global rare-disease hub involving 70 institutions that will allow scientists to share data from their genomics research projects.

The four projects, which will receive the funding over the next six years, are for the following international collaborations:
– EURenOMICS, led by Heidelberg University Medical Centre, Germany, to identify the genetic and epigenetic causes of rare kidney disorders.
– Neuromics, led by the University of Tubingen, Germany, to address rare neurodegenerative and neuromuscular disorders using next-generation whole-exome sequencing.
– RD-Connect, led by Newcastle University, UK, to develop a global infrastructure to share the research or rare disease projects.
– SUPPORT-IRDiRC, led by INSERM, France, to support international rare-disease collaboration through IRDiRC.

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