Chrysalis Project The Funders Constituent Committee (FCC) has set up a jointly Task Force with the Companies Constituent Committee (CCC) and the Patient Advocates Constituent Committee (PACC). The overarching goal of the Chrysalis Project is to identify key criteria (in terms of investments of time and resources) that would make rare diseases research more attractive […]
Read MoreConsideration of legislative framework to support the diagnostic odyssey commonly encountered in the instance of rare disease. New paper on the undiagnostic odyssey, an important topic faced by many rare diseases patients and families – you can find it under “Diagnositc” -. Western Australia has led the way in Australia in being the first state […]
Read MoreWORLD ORPHAN DRUG CONGRESS USA WEBINARS organizes this event scheduled on Wednesday April 22, 12 – 1pm EDT. There are many unprecedented challenges facing the rare disease community due to COVID-19 — maintaining patient access to rare disease therapies, managing delays in clinical trials, and ensuring patient support are all top of mind. Join this webinar […]
Read MoreThe Rare Diseases Are Not Rare! Challenge is a competition sponsored by the National Center for Advancing Translational Sciences (NCATS), which is part of the National Institutes of Health. We are asking entrants to use their creativity to raise awareness.This is an opportunity that combines art, science and medicine with the hope that it will bring enjoyment […]
Read MoreECRD will take place ONLINE on 14-15 May (more information) The ECRD 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.Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the […]
Read MoreIRDiRC has created a new section on its Resources and Recommendations in order to provide additional knowledge on rare diseases from a different perspective, the Social and Humanities Sciences. The first two articles have been recently published on undiagnosed and team work: Capturing Team Dynamics in the Wild: The Communication Analysis Tool by Klonek et al., […]
Read MoreIRDiRC is interested at hearing from you, in the frame of your own engagement in Rare Diseases with COVID-19 crisis: How it is affecting your work/practice How it is redirecting your activities and priorities What measures are being taken by you/your organizations What solutions you envisage What you feel IRDiRC could do for and with […]
Read MoreDear All, While the COVID-19 pandemic is spreading through the world, we wish to send a message to the IRDiRC community and express our nearness and encouragement to you all.The impact of COVID-19 outbreak on rare disease patients cannot be underestimated; not only their condition makes them frailer if infected, but also the exceptional burden […]
Read MoreNew interview of the IRDiRC chair, Dr Lucia Monaco recently had with ALS News Today. COVID-19 is impacting the daily lives of every person in the planet and it is also changing the research field, however Dr. Monaco remains confident that IRDiRC will see the approval of 1,000 new rare disease therapies by 2027 as […]
Read MoreThe 11th International Conference on Rare Diseases and Orphan Drugs (ICORD), South Africa, included the Africa-Rare initiative launch and facilitated multi-stakeholder engagement in the challenges facing, and opportunities for, Africans living with rare diseases. The following ICORD Global Call to Action, developed in collaboration with the International Rare Diseases Research Consortium, synthesizes the outcomes of the […]
Read More