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Youmna Ghaziri

Patient Advocate, UAE

Biography

Youmna Ghaziri is a published blogger, philanthropist, public speaker, an agriculture engineer from the American university of Beirut, wife and a proud mom of Lynn and Lara. Youmna’s blogging journey started in 2016 after her elder daughter Lynn was diagnosed with a rare disease called Erythromelalgia. Since then, Youmna adopted the mission of spreading awareness around her daughter’s rare disease to help others get a diagnosis and hopefully find a cure someday. Her focus is on a community and digital campaign to create awareness in addition to supporting other moms and families dealing with rare diseases and how to positively overcome the daily challenges associated with them.

Abstract

Abstract : Special Sessions: Patient Advocacy Groups - Red hand challenge to raise awareness about erythromelalgia