IRDiRC

International Rare Diseases Research Consortium

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  • 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

    RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the <a href=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

    NIH/FDA Virtual Workshop on Regulatory Fitness in Rare Disease Clinical Trials
  • 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

    Rare Diseases South Africa (RDSA) introduces validated patient registry

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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

 
Read more about our goals

CONTACT

IRDiRC – Inserm
Hôpital Charles-Foix
7 avenue de la République
94200 Ivry-sur-Seine
FRANCE

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