The second IRDiRC conference held in Schenzen, China: another successful and enlightening event
Last month, the much awaited 2nd International Rare Diseases Research Consortium (IRDiRC) conference took place in Shenzhen, China. Held on 7-9 November 2014, this conference was organised by IRDiRC in partnership with BGI to bring together rare disease stakeholders from all over the world to discuss and share experiences and expertise. This international conference was attended by more than 600 participants representing Europe, North America, Australia and Asia.
Encouraged by the success of the 1st IRDiRC conference, held in Dublin, Ireland in 2013, the main theme of this conference was also collaboration, placing emphasis on contributing towards expertise, information and technology via global networks to improve diagnosis of rare diseases, patient access to best treatment and care, and patient and family support. This year, along with the three tracks that mirror the scientific committees of IRDiRC - Diagnostics, Interdisciplinary, Therapies – a track focusing on education and training to better understand and provide top quality care for rare disease patients was also added.
This meeting boasted of attendance from policy makers, industry leaders, academicians as well as patient organisations from around the world. Representatives from regulatory bodies shared their expertise and pushed the need for more regulatory success for orphan drugs. Patient organisations gave an overview of the current need of patients and how coming together with a common agenda is urgent, but also achievable. Industry partners emphatically expressed the need to work with academicians, patient organisations and regulatory bodies to significantly increase the number and quality of drugs that is accessible to all. The attendees also heard from rare disease patients in China (in the picture below), which was not only inspirational but also a testament to the work of IRDiRC being fundamental to advance the cause of rare disease research in order to find more and better treatments for these patients.
Rare disease patients in China represented at the conference
IRDIRC promises to contribute to the development of 200 therapies for rare disease and means to diagnose all of them by 2020, which can only be possible through the collaborative efforts of academics, researchers, clinicians, industry leaders, policy makers and patient advocates, internationally. BGI is the world’s largest genomics centre that provides comprehensive high-throughput genomics platform and in-depth bioinformatics services for medical, agricultural and environmental applications. This conference held with the support of BGI China has cemented the partnerships between rare disease stakeholders from the West and the East and opened up immense collaborative possibilities for the future.
Selected presentation and photos from the conference with further information are available on the IRDiRC website.
Access selected presentations from the conference on the IRDiRC website
Go to the BGI website