7,000 challenges: the basis and burden of rare diseases

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Around 7,000 rare diseases have been identified, impacting an estimated 300 million people around the world, about 4% of the global population. Approximately 50% of those diagnosed with a rare disease are children, and 3 in 10 of them will die before the age of 5. Numbers differ across countries, but it is estimated that in Europe, less than 10% of patients with a rare disease receive treatment and only 1% are managed using an approved treatment plan, making this one of the major global health challenges for the 21st century.

This webinar, the first in a year-long series, will broadly examine critical topics in the rare-diseases field, including the causes of rare diseases, the latest research advances and challenges, and the importance of accurate testing, detection, and diagnosis, as well as policy and human rights issues, particularly in low-income countries.

Join our expert panel as they explain the basis and burden of rare diseases and offer a path forward.

This webinar last for approximately 60 minutes.



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Tiina Urv, Ph.D. (National Institutes of Health, Bethesda, MD)

Durhane Wong-Rieger, Ph.D. (Canadian Organization for Rare Disorders (CORD), Ontario, Canada)

Peter A. Merkel, M.D., MPH (University of Pennsylvania, Philadelphia, PA)

Flaminia Macchia, M.A. (Rare Diseases International, Paris, France)

Sean Sanders, Ph.D. (moderator, Science/AAAS, Washington, DC)

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