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
Press Release: Rare Disease Nurse Network (RDNN) announces registration as a charity with the UK Charity Commission
London, UK – July 2022: The RDNN Board of Trustees and Management is…
Commentary on 10 years of IRDiRC available as full text
We are proud to announce that the commentary on 10 years of progress…
Open letter: ECRD partner organisations call on the European Commission for a new European strategy on rare diseases
Following the 11th European Conference on Rare Diseases and Orphan Products (ECRD) that was held…