Don’t miss out the new IRDiRC publication developed by Therapies Scientific Committee (TSC) members Daniel O’Connor, Annemieke Aartsma-Rus, Anneliene Jonker, and Regulatory Scientific Committee (RSC) member, Michela Galbado – “Defining rare conditions in the era of personalized medicine“. “Despite these consensus features, there is currently no common global agreement on the impact and widespread application […]
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Under the Horizon Europe Framework Programme, a new two-stage call for proposals for “Establishing novel approaches to improve clinical trials for rare and ultra-rare diseases” was published on 27 July, 2023. The project generated from the topic should not only develop capacities and capabilities to execute innovative trial designs, but also plan to identify solutions […]
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We are delighted to announce that IRDiRC Therapies Scientific Committee (TSC) Vice Chair, Anneliene Jonker (University of Twente, The Netherlands), will give a talk on the drug repurposing guidebook at the RExPO23 Conference, that will take place on October 25-26, 2023 in Stockholm, Sweden. Anneliene will participate in Session 4 – Regulatory Perspectives, on the […]
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Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The deadline for nominations for the EURORDIS Awards 2024 has been extended […]
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The Rare Diseases University (RDU) is a physician-oriented, interactive, digital Medical Education program. It was designed to address the urgent need for better patient diagnosis and care for patients living with rare diseases around the world.The content is developed with the assistance of a faculty of doctors working in the field of rare diseases, and […]
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Rare Diseases International (RDI) and the Permanent Mission of Spain to the United Nations in New York are organizing the hybrid event “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” on Thursday, 21 September, 2023, from 13:00 to 14:30 EST. The event is co-organized […]
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The Global Research on Impact of Dermatological Diseases (GRIDD) project is a global initiative focused on demonstrating the impact of skin conditions on patients’ lives. Its purpose is to gather worldwide data on dermatological diseases directly from those affected. The heart of GRIDD lies in the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a […]
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The Orphan Disease Center (ODC) is offering 39 research opportunities focusing on 31 different rare diseases. The program provides a one-year grant to support research related to a rare disease represented in the 2023 Million Dollar Bike Ride. Number of awards and dollar amounts vary per disease based on fundraising totals by each disease team. […]
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“Rare on air” is a series of monthly podcasts developed by EURORDIS showcasing different interviews with people who live with a rare diseases, advocates and experts on rare disease policy. The podcast explores the unique experiences, challenges and successes of people from the rare disease community, and investigates how we can build a better world […]
Read MoreIRDiRC is delighted to share the manuscript “How to START? Four pillars to optimally begin your orphan drug development“, developed by the members of the IRDiRC Task Force “Orphan Drug Development Guidebook (ODDG)” together with the members of the Therapies Scientific Committee (TSC). The paper proposes a checklist for orphan drugs named START – a […]
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