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Rare Disease Day 2020

CALLING ALL ADVOCATES! February 29, 2020, will be the 30th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities.   Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within that 5%, […]

Awareness

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What is the ECD Patient Registry?

Are you a part of the ECD Patient Registry? Did you know that it is extremely important to take part in such a registry? Understanding every aspect of trials, registries, or simply getting treatment for a rare disease can be overwhelming. Let us help explain the importance of a patient registry, and why you should […]

Research

Last updated: February 25, 2020

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  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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