According to a story from Porphyria News, Lucia Monaco, PhD, is the chair of the International Rare Diseases Research Consortium (IRDiRC). Despite the ongoing disruptions caused by the coronavirus/COVID-19 pandemic, she believes that the organization is still more than capable of reaching its goal of 1,000 new treatments for rare diseases by 2027. The consortium was first launched in 2011 as a joint project of the US National Institutes of Health (NIH) and the EU’s European Joint Programme on Rare Diseases (EJP RD).
Sticking to the Goal
The IRDiRC was originally planning to host a meeting on March 12-13th that was expected to host around 200 rare disease experts in Berlin, but like many other professional gatherings, it had to be cancelled as COVID-19 began to spread rapidly across the EU member states. Monaco acknowledges that the pandemic will present a challenge to their operations and will almost definitely slow their progress. While there are genuine concerns about how the IRDiRC’s research operations can be sustained, Monaco still hopes that the impacts for the group will be minor. Unfortunately, it’s difficult to be certain about it at this juncture.
Creating New Therapies
The organization was established with one primary goal: that by the year 2027, any one that is living with a rare disease will be able to get the correct diagnosis, the most effective care, and an available therapy in a year of coming to medical attention. Those with all-new diagnoses would be integrated into a research and diagnostic system that would be global in scale. The IRDiRC is also aiming for the full maturation of methods for assessing the impacts of treatment and diagnosis for rare disease patients.
The IRDiRC is comprised of a total of 62 member organizations, such as drug companies, nonprofit groups, and government agencies. To take part, these organizations are expected to invest at least $10 million towards rare disease research development in a five year period. The group was first established with the goal of reaching 200 rare disease treatments by 2020, but the goal expanded in scope when it was clear that this initial target would be exceeded.
To learn more about this organization, click here.
