On February 25th, IRDiRC member Western Australian Department of Health announced the launch of a new Rare Care Centre in Perth, Western Australia, which will provide a holistic model of care for children with rare and undiagnosed diseases. Based at Perth Children’s Hospital (PCH), the Centre has secured funding from leading Australian philanthropists and foundation, with a total commitment of […]
Read MoreIn the framework of the French Presidency of the Council of the European Union (PFUE 2022), and under the high patronage of the French Ministry of Higher Education, Research and Innovation (MESRI), Inserm (French national institute of health and medical research) is organising a scientific symposium on Rare Diseases. The
Read MoreIn the framework of the French Presidency of the Council of the European Union (PFUE 2022), and under the high patronage of the French Ministry of Higher Education, Research and Innovation (MESRI), Inserm (French national institute of health and medical research) is organising a scientific symposium on Rare Diseases. The hybrid conference (in-person for specially invited attendees and online for […]
Read MoreThe Chan Zuckerberg Initiative (CZI) is inviting applications from collaborative teams bringing together patient-led rare disease organisations and research teams for 4-year research projects aimed at advancing understanding of the fundamental science of rare diseases across two requests for applications (RFAs): The Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease RFA aims to support the application of single-cell biology methods to rare inflammatory pediatric […]
Read MoreThe Chan Zuckerberg Initiative (CZI) is inviting applications from collaborative teams bringing together patient-led rare disease organisations and research teams for 4-year research projects aimed at advancing understanding of the fundamental science of rare diseases across two requests for applications (RFAs): The Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease RFA aims to support the application of single-cell biology methods to rare inflammatory pediatric […]
Read MoreThe iHope
Read MoreThe iHope™ Genetic Health (iGH) program launched by Genetic Alliance and supported by Illumina aims to expand access to whole-genome sequencing to low- and middle-income communities around the world, with more than one-third of funds being allocated to patients in Africa. iGH is requesting information from stakeholders to formulate a Request for Proposals (RFP) from laboratories […]
Read MoreOn February 7th 2022, Horizon Magazine, issued by the European Commission’s Directorate-General for Research and Innovation, published an interview with past and present IRDiRC leadership. In view of Rare Disease Day on February 28th, the magazine has dedicated its Monthly Focus to developments in rare disease research and innovation in Europe and beyond, with a […]
Read MoreOn February 7th 2022, Horizon Magazine, issued by the European Commission’s Directorate-General for Research and Innovation, published an interview with past and present IRDiRC leadership. In view of Rare Disease Day on February 28th, the magazine has dedicated its Monthly Focus to developments in rare disease research and innovation in Europe and beyond, with a […]
Read MoreIRDiRC member Dr. Anneliene Jonker, Vice Chair of the Therapies Scientific Committee (TSC) of IRDiRC, has been interviewed extensively for an article published in the February 2022 issue of Medical Technology magazine. The article, titled “Medical devices for rare diseases: the unmet need”, presents the goals of the IRDiRC Working Group on MedTech for Rare […]
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