Search Results for : recommended

Archives IRDiRC in the news

[toc] 2017 December 19, 2017, The international rare diseases research consortium: policies and guidelines (OrphaNews) December 19, 2017, Results of what matters to rare disease patients: IRDiRC task force on patient-centered outcome measures (OrphaNews) November 8, 2017, Patient-Centered Outcome Measures (Rare Disease Report) November 6, 2017, Patient Perspective Is Central to Research in Rare Diseases, […]

IRDiRC in the News

[toc] 2020 April 2020. D’Genes y otras organizaciones elaboran un decálogo de necesidades de personas sin diagnóstico. 20 minutos March 20 2020. Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19. ALS News March 10 2020. Malattie rare: «e ora non dimentichiamo la ricerca di base». Vita February 28 2020. Q&A: ‘We […]

IRDiRC Publications & Recommendations

  Scientific Publications 2022 Recommendations from the IRDiRC Working Group on methodologies to assess the impact of diagnoses and therapies on rare disease patients. Galliano Zanello, Chun-Hung Chan, David A. Pearce on behalf of IRDiRC Working Group. Orphanet Journal of Rare Diseases, 2022. Access the paper here. Research on rare diseases: 10 years of progress […]