Farah was born with a rare and debilitating skin condition Epidermolysis Bullosa simplex (EBS). Throughout her childhood, she endured excruciating pain, countless hospital visits, and the emotional toll of living with a condition that set her apart. Despite these challenges, Farah's spirit remained resilient. As she grew older, she realized that many others with EB, especially children, lacked the emotional and financial support needed to cope with the disease. Driven by a desire to make a difference, Farah founded the Butterfly Wings Foundation, a nonprofit organization dedicated to providing resources, advocacy, and medical assistance to EB patients and their families. What began as a personal struggle blossomed into a mission to bring hope and support to a community often overlooked. Through her foundation, Farah has become a beacon of strength, ensuring that no one with EB feels alone in their journey.
Butterfly Wings Organisation—DEBRA Jordan is the premier charity organisation in Jordan dedicated to supporting people with the rare skin condition epidermolysis bullosa and their families.
The date the organisation was established: 2023
The country: Jordan
The number of cases: is 53 and growing
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