Alexandra Heumber Perry

Chief Executive Officer, Rare Diseases International

Alexandra Heumber Perry is the Chief Executive Officer of Rare Diseases International, the global alliance of Persons Living with a Rare Disease. She has dedicated her entire career to contribute improving healthcare policies to benefit people living with diseases, with a particular focus in neglected and vulnerable people. She has over 20 years’ experience in global health with demonstrated capabilities in patient advocacy and multi-stakeholder partnership. As CEO of RDI, Alexandra sets the strategic direction, drives the organization’s goals of raising awareness of
rare diseases, improving access to diagnostics, treatments and care, advocating for the rights of patients around the world and representing its members and enhancing their capacities to ultimately improve lives of Persons Living with a Rare Disease.

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To advance the field, we believe it is critical to learn from peers about how they are making major strides in diagnosis for rare disease.

The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease is an association composed of a diverse group of organizations and individuals committed to shortening the time for an accurate diagnosis for all children with rare diseases. The views expressed herein are solely those of the Commission and do not represent any individual, co-chair, or member organization’s views or opinions.