Today is the World Birth Defect Day and IRDiRC is happy to support it by raising awareness together with the other hundreds organizations worldwide. There are many types of birth defects, also known as congenital anomalies, congenital disorders or congenital condition and today we celebrate them all in just one collective voice (#manybirthdefects1voice). Today, MotherToBaby […]
Read MoreThe 9th edition of the Eurordis Black Pearl Awards event is taking place today in Brussels. Irdirc for the second year in a row, will be there with Prof. Annemieke Aartsma-Rus who is the recipient of the Scientific Award and with Dr. Daria Julkowska with the European Rare Disease Leadership Award. Congrats to both of them for […]
Read MoreThe first edition of the IRDiRC Newsletter in 2020 is out! IRDiRC celebrates the Rare Disease community with messages from Dr. David Pearce – Vice-Chair and Dr. Lucia Monaco – Chair of the consortium that official announces the launch of the IRDiRC Roadmap 2020. Furthermore, in this edition you will find a New Recognized Resource, […]
Read MoreIRDiRC 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 […]
Read MoreIRDiRC 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 […]
Read MoreIRDiRC 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 […]
Read MoreWelcome 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 […]
Read MoreIRDiRC 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 […]
Read MoreIRDiRC 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 […]
Read MoreIRDiRC 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, […]
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