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
Publishing of Guidance on clinical evaluation of orphan medical devices
The European Commission has published a new Guidance on clinical evaluation of orphan…
Newborn screening in Mexico and Latin America: present and future
IRDiRC announces the launch of a new paper on “Newborn screening in Mexico…
RARE ON AIR – Ayça Şahin’s story
Listen now to EURORDIS RARE ON AIR latest episode, where Julien Poulain (Communication…