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 […]
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, […]
Read MorePodcast 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 […]
Read MoreIRDiRC 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 […]
Read MoreThe IRDiRC newsletter special flash edition is out! The early bird registration for the joint RE(ACT) Congress and IRDiRC Conference has been extended until FRIDAY Dec 20th! IRDiRC members have reduced registration fees. Full program and list of Speakers are available. Submit your abstract! Don’t miss it and join us.
Read MoreIRDiRC is an associate partner of the ECRD. The event is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. The event draws together more than 800 participants from over 50 countries around the world. Leading, inspiring and engaging all stakeholders to […]
Read More“Yakup’s Journey to Hope” was created in collaboration with the GA4GH Driver Project and The European Joint Programme on Rare Diseases (EJP RD). Follow the story of Yakup as he embarks on a journey to find a diagnosis for his neurogenetic rare disease condition. The video premiere was at the GA4GH plenary 2019. Patient can […]
Read MoreThe goal is to create a unique platform that does not exist anywhere else, a European multi-sector Partnership for health innovation Five industry associations representing pharmaceutical, biotech and medical technologies industries operating in Europe (COCIR, EFPIA, MedTech Europe, EuropaBio and Vaccines Europe) have come together to work on a Strategic Agenda for Innovation in Healthcare. This Agenda […]
Read MoreDr. Aartsma-Rus is a professor in translational genetic and a member of IRDiRC Therapies Scientific Committee. In this video she tells us why IRDiRC is needed in the rare disease field and why it is important have different stakeholders collaborating. IRDiRC does it and all its members are committed to reach the new IRDiRC goals […]
Read More11 – 14 March 2020. Berlin, Germany EARLY REGISTRATION IS OPEN, SUBMIT YOUR ABSTRACT! The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium, are glad to announce the RE(ACT) Congress and IRDiRC Conference 2020 – Berlin, Germany 11-14 March.This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together […]
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