€144 million earmarked for new research on rare diseases

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The European Commission will provide €144 million of new funding for 26 research projects, with the objective to deliver 200 new therapies for rare diseases by 2020, the EU's executive announced today (28 February).

The projects, announced on Rare Disease Day 2013, is expected to help improve the lives of some of the 30 million Europeans suffering from a rare disease.

The goal is to pool resources and work beyond borders in order to get a better understanding of rare diseases and find adequate treatments.

The Commission is hoping that the projects, which will be conducted together with national and international partners, will deliver 200 new therapies for rare diseases and the means to diagnose most of them by 2020.

Over 300 participants from 29 countries in Europe and beyond will be brought together in the selected projects, including teams from leading academic institutions, smaller businesses and patients' groups.

"Most rare diseases affect children and most of them are devastating genetic disorders resulting in greatly reduced quality of life and premature death," said Máire Geoghegan-Quinn, the EU Commissioner for Research, Innovation and Science.

"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 in a statement.

Better diagnoses to improve lives

The 26 new projects cover an array of rare diseases including cardiovascular, metabolic and immunological disorders. They will aim at developing substances that may become new or improved therapies for patients and understanding better the diseases' origins and mechanisms.

The projects will also try to help a better diagnosing and improve the management of rare diseases in hospital and healthcare settings.

Teams will work on varied challenges, including a new 'bioartificial' liver support system to treat acute liver failure, powerful data processing operations to develop novel diagnostic tools and biomarkers and screening strategies for therapeutic agents against rare kidney diseases.

They will also work on 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) which is the biggest collective rare diseases research effort in the world.

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 500 million.

A disease is defined as rare in Europe when it affects not more than 1 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.

  • 16-17 April: International Rare Diseases Research Consortium Conference 2013 in Dublin, Ireland.

European Commission


  • International Rare Diseases Research Consortium: Website

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