IRDiRC – International Rare Diseases Research Consortium

RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease.

This survey aims to identify factors that influence the process of obtaining a diagnosis and obstacles along the journey. This is a global survey, … Read more

Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease." />
NIH/FDA Virtual Workshop on Regulatory Fitness in Rare Disease Clinical Trials

The National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS) and the U.S. Food and Drug … Read more
Rare Diseases South Africa (RDSA) introduces validated patient registry

Rare Diseases South Africa (RDSA) has a vision to see a South Africa where those impacted by rare diseases and congenital disorders have access to … Read more

RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease.