News

Chan Zuckerberg Initiative hosts Networking Expo for Patient-Partnered Collaborations (PPC) for Rare Disease

Earlier this year, the Chan Zuckerberg Initiative (CZI) launched two Requests for Applications (RFA) for grant opportunities that will fund collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed at advancing our understanding of the fundamental science of rare diseases. The Networking Expo is a two-day ideation and matchmaking workshop specifically designed as an opportunity for researchers and […]

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IRDiRC supports 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022

The 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022 is being organized by EURORDIS and co-organized by Orphanet, with IRDiRC serving as an associate partner. The ECRD is a patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies. The fully online conference will take place on June 27th 

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IRDiRC supports 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022

The 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022 is being organized by EURORDIS and co-organized by Orphanet, with IRDiRC serving as an associate partner. The ECRD is a patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies. The fully online conference will take place on June 27th – July 1st from 14.00 – 18.00 CET. Poster abstracts […]

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New Rare Care Centre will coordinate rare disease care at Perth Children’s Hospital, Western Australia

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 […]

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Inserm organises Scientific Symposium on Rare Diseases

In 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

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Inserm organises Scientific Symposium on Rare Diseases

In 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 […]

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Chan Zuckerberg Initiative announces two patient-partnered Requests for Application (RFA) with rare disease focus

The 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 […]

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Chan Zuckerberg Initiative announces two patient-partnered Requests for Application (RFA) with rare disease focus

The 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 […]

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