The International Rare Disease Consortium (IRDiRC) proudly supports the World Health Assembly (WHA) resolution on Rare Diseases. This is a crucial step towards addressing global disparities in care, research, and treatment for people living with rare diseases.
Read the Position Statement here:
Under the banner of “Health for All”, this resolution has the potential to elevate the visibility of rare diseases on the global health agenda, paving the way for improved diagnosis, care, and treatment for millions worldwide.
Key priorities endorsed by IRDiRC include (REVISED 31 January, 2025)
(1) Diagnostics improvement – Advancing diagnostic tools and technologies to ensure earlier, more accurate detection of rare diseases, leading to timely interventions and better patient outcomes.**
(2) Therapy development – Promoting and accelerating the development of effective therapies for rare diseases by encouraging collaboration and investment in innovative treatments.**
(3) Data collection – Incentivizing and funding collection and standardization of data that can be used in research and regulatory context.
(4) Data sharing – Enabling and incentivizing the sharing of – and access to – regulatory quality data for all stakeholders involved in research.
This initiative aligns perfectly with IRDiRC’s vision: enabling all individuals with a rare disease to receive an accurate diagnosis, appropriate care, and available therapy within one year of first seeking medical attention.