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EU provides €144 million for new research on rare diseases

The European Commission has recently, on Rare Disease Day 2013, announced €144 million of new funding for 26 research projects on rare diseases. The projects will 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.

Máire Geoghegan-Quinn, European Commissioner for Research, Innovation and Science said: "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."

The 26 new projects cover a broad spectrum of rare diseases such as cardiovascular, metabolic and immunological disorders. They will aim at:

  • developing substances that may become new or improved therapies for patients;

  • understanding better the diseases' origins and mechanisms;

  • better diagnosing rare diseases; and

  • improving 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, 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 world-wide. Initiated by the European Commission, together with national and international partners, its key objective is to deliver, by 2020, 200 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. Altogether, they represent an investment of almost 500 million euro.

To view all the projects, please see the MEMO/13/148 and visit the website.


A disease or disorder 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.

More information

EU health research on rare diseases


International Rare Diseases Research Consortium (

International Rare Diseases Research Consortium Conference 2013 (Dublin, Ireland

on 16-17 April 2013) (

EU policy on rare diseases


6th international Rare Disease Day(

FP7 Project Information Portal - CORDIS (

ICS.AI On-Demand Webinar 3rd March 2021