New IRDiRC Publication: Recommendations from the IRDiRC Working Group on Goal 3

IRDiRC is pleased to announce that the recommendations from the Working Group on Goal 3: Developing methodologies to assess the impact of diagnoses and therapies on rare disease patients have been published in the Orphanet Journal of Rare Diseases.

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The Working Group characterized a set of metrics, tools and needs required for appropriate data collection and establishment of a framework of methodologies to analyze the socio-economic burden of rare diseases on patients, families and health care systems.