European Union has announced 38 million Euro funding for research towards new treatments and for the development of a central global rare disease hub involving 70 institutions – including AFM-Telethon – that will allow scientists to share data from their genomics research projects. This will lead to faster diagnosis and better treatments and improve the quality of life for patients with rare diseases.
The International Rare Diseases Research Consortium (IRDiRC), under which these new grants have been awarded, aims to accelerate research into rare diseases and intensify international collaboration over the next six years.
- Identifying the genetic and epigenetic causes of rare kidney disorders ;
- Addressing rare neurodegenerative and neuromuscular disorders using next generation whole-exome sequencing ;
- Developing a global infrastructure to share the research of rare disease projects ;
- Supporting international rare disease collaboration through IRDiRC.
A rare disease is defined by the European Union as one that affects fewer than five people in every 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases, and approximately 30 million people across Europe are affected by a rare disease.