Search Results for : recommended

Proving the burden of living with a rare disease

The Global Research on Impact of Dermatological Diseases (GRIDD) project is a global initiative focused on demonstrating the impact of skin conditions on patients’ lives. Its purpose is to gather worldwide data on dermatological diseases directly from those affected. The heart of GRIDD lies in the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a […]

Annual IMPC Conference ‘The Power of Mouse Genetics: Opportunities for Genomic and Precision Medicine’ 10-11 July in Oxford (UK)

This year the annual conference of the International Mouse Phenotyping Consortium (IMPC) will be held at Keble College, Oxford, UK from the 10-11 July, 2023. The conference is entitled: “The Power of Mouse Genetics: Opportunities for Genomic and Precision Medicine“. It features an outstanding list of distinguished speakers at the forefront of mouse and human […]

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 2024 Global health for rare diseases through primary care. Gareth Baynam, Adam L. Hartman, Catherine V. Letinturier et al. European Journal of Medical Genetics, 2024. Access the paper here. Addressing Diagnostic Gaps and Priorities of the Global Rare Diseases Community: Recommendations from the IRDiRC Diagnostics Scientific Committee. David R. Adams, Clara DM […]