October 29, 2013
The launch of the Chinese Rare Disease Research Consortium (CRDRC) was formally announced on September 14, 2013, during the first Chinese Rare Disease Symposium, that was presided by Prof. Paul Lasko, the President of the International Rare Disease Research Consortium (IRDiRC), and Prof. Penggen Li, the President of Huazhong University of Science & Technology (HUST).
CRDRC, led by the HUST and the Hong Kong University was accepted as a member of IRDiRC on August 5, 2013. Qing K Wang, Dean of School of Life Science and Technology of HUST, and Pak Chung Sham, Professor of University of Hong Kong, were elected as the Chairman and Vice –Chairman of the Consortium respectively. More than twenty universities, colleges and institutes and fifty specialists are now members of this consortium. CRDRC aims to team up with several other researchers and organisations investing in rare disease research in China.
The goals of CRDRC are multifold as they include establishing a national registry for rare diseases in China as well as establishing and providing access to harmonized data and samples. Efforts of CRDRC will go towards identifying 5-30 rare disease genes per year and make genetic testing based on these genes available for patients as well as performing translational research with newly identified genes and facilitate development of therapeutic strategies. CRDRC will endeavor to provide funding support of rare disease research in China by forming an alliance with the China Natural Science Foundation, the Ministry of Science and Technology, and the Ministry of Health. These will include participating in joint calls or international collaborative funding for rare disease research with the EU, Australia, and other countries. Finally, CRDRC will seek to launch a Rare Disease Research Institute in China to centralize the rare disease research efforts in China.