Report on the First International Rare Disease Research Consortium conference and IRDiRC policy guidelines are now online
The International Rare Disease Research Consortium (IRDiRC) has posted its conference report which was held on 16-17 April 2013 in the city of Dublin, Ireland. They have also posted the IRDiRC policies and guidelines document which highlights the guidelines provided by the scientific committee members, to the IRDiRC members which includes researchers, patients and their representatives as well as funding bodies.
The IRDiRC conference attracted rare disease stakeholders with a common theme in mind: collaboration for furthering the cause of rare disease research. The goal of IRDiRC is to facilitate in providing 200 therapies for rare diseases by 2020 as well as means to diagnose all of them as delineated in the IRDiRC policies and guidelines document. The first IRDiRC conference has been the stepping stone towards achieving this goal and the conference report underscores this.
The conference report provides a detailed summary of the plenary session, which included presentations from Dr. Ruxandra Draghia from the European Commission, Dr. Christopher Austin from the National Institute of Health, Dr. Sharon Terry: chief executive of Genetic Alliance and Dr. Hans Schikan from the Dutch Biopharmaceutical company Prosensa. This diverse and international set of presenters set the stage for a stimulating and information packed event.
The range of topics covered during the conference, was divided into three tracks: the therapies, diagnostics and interdisciplinary. This report provides an informative synopsis of presentations in each track and also accentuates the importance of these presentations in tying into the goals of IRDiRC. An outline of the closing plenary session, a captivating epilogue of this conference, with equally diverse opinions from a variety of thought leaders, including Dr. Paul Lasko, the current chair of IRDiRC, is also presented in the report. Conclusions from each track and recommendations on how the information presented can lead into fulfilling the goals of IRDiRC, augments the value of this document.You can also find the poster abstracts and presentations from the conference on the website.
The conference brought together many researchers and the success of the conference can be discerned by the fact that several initiatives to aid rare disease research are underway, since the conference.More details can be found on the website or by contacting IRDiRC.
Read the report on the IRDiRC website
Photo courtesy: Lensman Photographic Agency