The Solve-RD consortium and associated European Solve-RD network, including among others six European Reference Networks, EURORDIS, Orphanet and leading European Rare Disease Clinicians and Researchers in 20 countries, call upon all European RD stakeholders, including EU Member States, the European Commission, the Council of the European Union, the general public and private organisations active in […]
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IRDiRC is thrilled to present a new video from the Interview Series with its members. This month we have in the spotlight David Adams, IRDiRC Diagnostics Scientific Committee (DSC) Chair and Deputy Director of Clinical Genomics at NHGRI/NIH (USA). Check out David’s answers on what IRDiRC means for him and the role it plays for […]
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Under Horizon Europe, the European Commission together with member states and associated countries decided to implement the Rare Diseases Partnership which brings a unique vision that aims at leaving no one behind by supporting robust patient need-led research, by utilising and maximising the power of health and research data, by engaging and coordinating regional, national, […]
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There are over 6,000 different rare diseases identified to date that affect 3.5% – 5.9% of the worldwide population. They have a big impact not only on the person diagnosed, but also on their families, friends, care takers and society as a whole. This is why development of medicines addressing rare diseases, also known as […]
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The Canadian Institute of Health Research – Institute of Genetics is pleased to announce the upcoming funding opportunity “National Pediatric Rare Disease Clinical Trials and Treatment Network”. The specific objectives of this funding opportunity are to: Develop a platform to support pediatric rare disease clinical trials in Canada; Increase the capacity to perform rare disease […]
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IRDiRC’s Diagnostic Scientific Committee (DSC) plays a critical role in identifying and addressing current and future bottlenecks to rare disease gene discovery and diagnosis. As we work towards improving rare disease diagnosis globally, the DSC is currently seeking to expand its membership by welcoming a rare disease diagnostic expert from Africa or Latin America and a […]
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The 35th Annual Meeting of EMSOS will take place this year on 10-12 May, 2023, in Brussels (Belgium), and it will join the efforts of all Belgian University Hospitals and professions represented in the organizing committee to address this year’s theme “Back to (multidisciplinary) reality: how far do we go?” Marc Dooms, IRDiRC Interdisciplinary Scientific […]
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On March 22, 2023, the Canadian Federal Government announced the launch of Canada’s Rare Disease Drug Strategy with a $1.5 billion commitment over three years to “improve access to new and emerging drugs, as well as support enhanced access to existing drugs, early diagnosis, and screening for rare diseases, and to improve the collection and […]
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A new network for nurses has been created to exchange skills, knowledge, solve problems and generate new ideas for the rare disease community. The first meeting to develop the network was a Roundtable event held on March 9-10, 2023, in Singapore, and was attended by rare disease global leaders and 30 nurses from 25 countries. […]
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Rare Diseases International (RDI) will participate to the WHO Expert Committee on the Selection and Use of Essential Medicines Open Session on 24 April 2023, and provide a statement regarding essential medicines for rare diseases. The agenda of the event is available here. More information: https://www.who.int/groups/expert-committee-on-selection-and-use-of-essential-medicines/24th-eml-expert-committee
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