Dan Simpson connected with Prof. Dave Pearce, Chair of the International Rare Diseases Research Consortium (IRDiRC) and professor of pediatric rare diseases. Prof. Pearce speaks passionately about the needs of rare disease patients around the world, and how the IRDiRC brings together funding agencies, companies, patient advocate groups, and other organization from approximately 80 countries to address patient care through a number of core initiatives.
The IRDiRC is a global collaborative initiative launched in 2011 by the European Commission and the U.S. National Institutes of Health to tackle rare diseases through research and accomplish the vision to 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. Dr. Pearce is an internationally recognized leader in a number of areas. He has published over 100 research papers on Batten disease, founded an international registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS), and has served on numerous NIH review committees, rare disease advisory boards and has organized rare disease workshops.