Welcome To IRDiRC
Our vision: Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention
Goal 1
All patients coming to medical attention with a suspected rare disease will be diagnosed within one year if their disorder is known in the medical literature; all currently undiagnosable individuals will enter a globally coordinated diagnostic and research pipeline
Goal 2
1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved options
Goal 3
Methodologies will be developed to assess the impact of diagnoses and therapies on rare disease patients
Latest News
Learning from conect4children: A Collaborative Approach towards Standardisation of Disease-Specific Paediatric Research Data
Connect4Children (c4c), funded by the Innovative Medicines Initiative 2 Joint Undertaking, a public–private…
Mark your calendars for WODC USA!
Only 8 days to go until the World Orphan Drug Congress USA 2024…
Alexion – NMOSD Mental Health Study
“My care team consists of over 30 healthcare professionals and I can’t recall…