Category: IRDiRC

The International Rare Diseases Research Consortium is launching a call for experts to support five new activities. Check out the newly approved Task Forces and Working Group : More details on the experts’ profiles: here More details on the experts’ profiles: here More details on the experts’ profiles: here More details on the experts’ profiles: […]

The Interdisciplinary Scientific Committee (ISC) and Patient Advocacy Constituent Committee (PACC) are establishinga Task Force on “Stigma and rare diseases”. Globally more than 300 million people are living with a rare disease (PLWRD). For many, stigma is a critical health and social barrier with a high unmet need, that is estimated to be an overtly expressed […]

The Therapies Scientific Committee (TSC) is establishinga Working Group on the Engagement of Young People Living with Rare Diseases in Therapy Development. The aim of the working group is to develop a landscape view of the field and create practical tools such a decision tree to help inform stakeholders involved in pediatric rare diseases research and therapies development. Engaging […]

The Funders Constituent Committee (FCC), the Companies Constituent Committee (CCC) and the Regulatory Scientific Committee (RSC) are establishing a Task Force on International Regulatory Convergence aiming to identify barriers towards mutual recognition of the approval of rare disease therapies by different jurisdictions and propose concrete solutions. The Task Force will follow a disease agnostic approach and focus […]

The Diagnostic Scientific Committee (DSC), Interdisciplinary Scientific Committee (ISC), and Therapies Scientific Committee (TSC) are jointly establishing a Task Force on “Bridging Diagnostics to Therapies and Care” with the following objectives: We are looking for members to populate this Task Force with the below expertise in one or more of the following areas: The usual time commitment includes […]

The Therapies Scientific Committee (TSC) is establishing a Task Force on Preventive Medicines, where drug activity can either halt or suppress the onset of disease symptoms or the condition itself. Across different stakeholders, there is a growing consensus that prevention must become a more significant part of health policy and pharmaceutical development programmes. The aim of the Task […]

The International Rare Disease Consortium (IRDiRC) proudly supports the World Health Assembly (WHA) resolution on Rare Diseases. This is a crucial step towards addressing global disparities in care, research, and treatment for people living with rare diseases. Read the Position Statement here: Under the banner of “Health for All”, this resolution has the potential to elevate the visibility of […]