IRDiRC Functional Analysis Task Force recently convened for a dynamic 1.5-day workshop in Paris!🇫🇷 Members of the task force from all over the world came together and discussed methodologies and strategies to advance functional analysis for rare diseases. With collaborative spirit at the forefront, the task force members worked on putting together a manuscript on […]
Read MoreIRDiRC’s Interdisciplinary Scientific Committee (ISC) is looking for new members to join forces for exciting projects! Four positions will be available starting May, and the committee is looking for experts with different backgrounds, ideally based in Middle East, Africa, North or South America: Phenotyping, Ontology and/or Digital Health expertise Patient Advocacy experience Policy and/or Legal […]
Read MoreThe Institute for Interdisciplinary Innovation in healthcare is organizing a symposium on “Gene therapy coming of age”, taking place on 28 March, 2024, at the Palace of Academies in Brussels, Belgium. The symposium will include sessions on: Recent research and clinical advances Patient perspectives Panel debate on economic and societal challenges I3H Annual Lecture “Gene […]
Read MoreAs part of our commitment in advancing initiatives related to rare diseases, IRDiRC is a proud partner at the 2024 World Orphan Drug Congress USA. This will be a defining event for the rare disease and orphan drug space globally, bringing together top key opinion leaders from around the globe. The upcoming event will cover […]
Read MoreThe International Niemann-Pick Disease Registry (INPDR) announced a new collaboration with Sanofi, by giving controlled access to anonymized registry information via INPDR’s research “Gateway” platform. This collaboration will provide Sanofi with Real-World Evidence that will support evaluation and decision making on the use of olipudase alfa to manage Acid Sphingomyelinase Deficiency (ASMD). INPDR is the […]
Read MoreWe are excited to announce that IRDiRC is now officially on LinkedIn! Get connected at: https://www.linkedin.com/company/international-rare-diseases-research-consortium-irdirc/about/
Read MoreJoin the Canadian Organization for Rare Disorders (CORD) in celebrating the most impactful Rare Disease Day! This year’s edition marks the Anniversary of the announcement of Canada’s first National Rare Disease strategy with an allocation of 1.5 billion dollars over 3 years. In addition, CORD will celebrate the launch of the first ever Rare Disease […]
Read MoreRare Disease Day is celebrated on the last day of February every year and is a special day for rare disease patients, researchers, and advocates. There are over 300 million people worldwide living with a rare disease, and together across borders and the 10,000+ rare diseases, we work towards more equitable access to diagnosis, treatment, care, […]
Read MoreIRDiRC is delighted to co-host, together with Hope for Rare Foundation and Fudan University, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference on May 23-25 in Shanghai (China). The conference will last for 2.5 days with 21 parallel sessions and several satellite meetings. It will […]
Read MoreThe Committee for Orphan Medicinal Products (COMP) organized their Plenary Meeting last week (13-15 February), that was chaired by Regulatory Scientific Committee (RSC) Vice Chair, Violeta Stoyanova-Beninska, and Armando Magrelli. Among the topics discussed were the new applications for orphan medicinal product designation (including amendments of existing designations), requests for protocol assistance with significant benefit […]
Read More