Abrar Al-Othman, a young Saudi woman born with Epidermolysis Bullosa (EB), a rare genetic disorder often referred to as “butterfly skin,” has achieved her dream of providing a platform for those affected by the condition!

Through the creation of her nonprofit organization, The Butterfly, Al-Othman has transformed her personal journey into a national movement.

Living with EB, which causes fragile skin to blister from minimal contact, has not been easy

A decade ago, Al-Othman began to openly share her story, using social media as a tool to spread positivity and inspire others in similar situations. She has since authored three books about her experiences, hoping to bring awareness to a condition that few people understand.

Realizing that more needed to be done to support EB patients, Abrar expanded her efforts beyond individual initiatives

 

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With the help of her family, she founded The Butterfly organization just three months ago, the first of its kind in Saudi Arabia to focus on improving the lives of those living with the disease. The organization’s mission includes providing resources, raising awareness, and creating a community of support for families affected by EB.

This weekend, The Butterfly held its first public event, a three-day awareness campaign at a Jeddah shopping mall

The event, which coincided with Epidermolysis Bullosa Week, offered patients and their families the chance to connect with supporting associations and learn more about the condition. The campaign marks a significant step in the organization’s mission to foster greater understanding and support for EB patients throughout the Kingdom.