An article published in European Journal of Human Genetics describes the peer-reviewed quality label of the International Rare Diseases Research Consortium (IRDiRC) named ‘IRDiRC Recognized Resources’, which was initially called ‘IRDiRC Recommended’. The article describes 13 resources that have been beneficiaries of this quality standard. These resources were chosen for the role in advancing the goals of IRDiRC. They resources chosen contribute towards specific features such as data sharing for discovery, knowledge organisation and ontologies, networking patient registries, and therapeutic development. According to the authors “widespread adoption by the community of such recognised resources is expected to facilitate the IRDiRC goal to enable the development of 200 new therapies by 2020.”
Read the PubMed abstract
Save the date for the third IRDiRC conference in Paris, France
The third conference of the International Rare Diseases Research Consortium (IRDiRC) will take place February 8-9, 2017 in Paris, France at the conference center of Université Pierre et Marie Curie (UPMC) Jussieu.
Five years have passed since the initial launch of IRDiRC in 2011 and considerable advances have been made in rare diseases research. This conference presents a unique opportunity to reflect upon this progress, confront barriers, and together, form new collaborations to take on challenges posed by rare diseases. Past conferences were held in Dublin, Ireland and Shenzhen, China.
All stakeholders – investigators, policy makers, opinion leaders, critical thinkers, young researchers, patient advocates and industry alike – active in the area of rare diseases from across the globe are invited to join us to celebrate achievements in the field, identify future milestones and goals, and work toward bringing diagnoses and therapies to all rare disease patients.
Registration for this conference will open shortly.