[searchandfilter fields=”search,category,post_tag”] Scientific Publications 2025 Regulatory sandboxes: A new frontier for rare disease therapies. Galliano Zanello, Violeta Stoyanova-Beninska, Oxana Iliach, Daniel Scherman, Samantha Parker, David A. Pearce. Rare. 2025. Access the publication here. What matters ethically about how the UDN has changed since its inception? David A. Pearce, Elena-Alexandra Tataru. AMA Journal of Ethics, 2025. Access the publication here. […]
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 Publications & Recommendations
Scientific Publications 2026 Translating multi-omics into healthcare: requisites for scalable and equitable implementation. Birute Tumiene, Gareth Baynam, et al. Human Genomics, 2026. Access the publication here. Challenges and opportunities for the use of telehealth in rare disease diagnosis, treatment, research, and education: key opinion leader interviews by the IRDiRC telehealth task force. Melissa Parisi, Adam Hartman, […]