Posts by Marlène Jagut

The Scientific Secretariat of IRDiRC ...

The Scientific Secretariat of IRDiRC is recruiting a Manager of International Scientific Cooperation

The Scientific Secretariat of the International Rare Diseases Research Consortium (IRDiRC) is currently recruiting for a position in Paris, France:   Manager of International Scientific Cooperation   The Scientific Secretariat of IRDiRC is recruiting a Manager of International Scientific Cooperation. The person occupying this position organizes the action plan for the Task Forces in collaboration with their Chair and […]

Addressing challenges in the diagnosi...

Addressing challenges in the diagnosis and treatment of rare genetic diseases

In a commentary published last month in Nature Reviews Drug Discovery, Kym Boycott and Diego Ardigo, Chairs of the IRDiRC Diagnostics and Therapies Scientific Committees, respectively, discussed diagnostic and therapeutic challenges for rare diseases and options on how to tackle them.   The introduction of next generation sequencing (NGS) in 2010 as a diagnosis method […]

IRDiRC Roadmap 2018

IRDiRC Roadmap 2018

Capitalizing on the momentum of progress made in rare diseases research over the past six years, the International Rare Diseases Research Consortium (IRDiRC) devised a new set of global rare disease goals for the upcoming decade. In August 2017, IRDiRC raised the bar for all stakeholders working on rare diseases, as the Consortium presented its […]

Special registration rate for the RE(...

Special registration rate for the RE(ACT) Congress that will take place on March 7-10, 2018 in Bologna, Italy

The RE(ACT) Congress – International Congress on Research of Rare and Orphan Diseases was initiated in 2012 by the BLACKSWAN Foundation to create a human platform to scale up scientific cooperation on rare and orphan disease. The 4th edition is co-organized in collaboration with E-RARE ERA-NET for research programs on rare diseases. Tthe RE(ACT) Congress 2018  will be held at the Istituto […]

IRDiRC: 2017 Retrospective

IRDiRC: 2017 Retrospective

The year 2017 was a very rich and productive one for IRDiRC: 9 new members, 8 scientific publications, 6 new IRDiRC Recognized Resources, the official start of 3 Constituent Committees, and most significantly, the unveiling of 3 new goals supporting IRDiRC’s new vision for the next decade. In February, IRDiRC organized its 3rd conference in […]

Data Sharing from Clinical Trials – A...

Data Sharing from Clinical Trials – A research Funder’s perspective

An article by Kiley et al. in the New England Journal of Medicine presents the specific vision of research funders (Wellcome Trust, Medical Research Council, Cancer Research UK, and Bill and Melinda Gates Foundation) for optimizing the value of data produced in studies, especially clinical trials, that they funded. As the need in medical research […]