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IRDiRC Roadmap 2020 has been presented by Dr. Lucia Monaco, chair of the consortium, in the Jan – Feb 2020 newsletter recently released. IRDiRC has created #4 new actions to tackle relevant and urgent matters that are impacting directly the lives of people with rare diseases: Chrysalis Project: Identify key criteria that would make rare […]

IRDiRC has recently accepted a new Recognized Resources, the hPSCreg, a database that provides an overview of human pluripotent stem cell lines (hPSC) lines available for research. The Registry contains some hPSC lines from donors with rare diseases, it is freely accessible that allows searching for cell lines and for information available about these cell […]

IRDiRC has been mentioned on the official “Orientation paper” document prepared by the EU that presents suggestions for key impacts to be targeted in the first four years of Horizon Europe (2021-2024), including the Health cluster for Rare Diseases under the European Partnerships umbrella (pg. 43). “Rare Diseases”: This research and innovation partnership would aim […]

Welcome to Rare Disease Ghana Initiative (RDGI) and Iberoamerican Alliance for Rare Diseases (ALIBER) to the IRDiRC – PACC committee! The RDGI is represented by Samuel Agyei Wiafe, Founder and Executive Director and ALIBER by Alba Ancochea as its Advocacy Advisor. Are you part of a patient organization? Do you share the IRDiRC vision and […]

IRDiRC newsletter, December edition, is online. In this edition you will find: A reminder about the early bird registration for the The RE(ACT) Congress and IRDiRC Conference that will close on Dec 20 IRDiRC highlights such as the Privacy-Preserving Linkage of Genomic and Clinical Data Sets paper from the Privacy-preserving data linkage IRDiRC Task Force […]

IRDiRC congratulates with Dr. Daria Julkowska for the EURORDIS Black Pearl 2020 – European Rare Disease Leadership Award! Congratulations! <<The European Rare Disease Leadership Award recognises the outstanding leadership and dedication Dr. Julkowska has shown to the rare disease community and the positive impact she has had on rare disease research and partnerships in Europe […]

IRDiRC congratulates Prof. Annemieke Aartsma-Rus for having been awarded of the EURORDIS Black Pearl 2020 – Scientific Award! Congratulation for this important achievement. <<The Scientific Award recognises Professor Aartsma-Rus’ exceptional achievements and dedication in the field of Duchenne Muscular Dystrophy (DMD). She is widely recognised as a world leader in the field of DMD research, […]

Podcast episode of Improbable Developments with Dr Dave Pearce, President of Innovation and Research Sanford Research and and Vice Chair of the IRDiRC Consortium Assembly. Dr. Pearce shares his inspiring story and how he got involved in Batten Disease research and where that work has taken him since.  In his role as President of Innovation […]

IRDiRC has participated at the Rare2030 Panel of Experts workshop that has been recently held in Brussel, thanks to Dr. Lucia Monaco, our Chair. Rare 2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved […]