Our Story

In September of 2021, Ghazal was diagnosed with Type 1 diabetes, a year after, Maria was also diagnosed with Type 1 diabetes. With time, more symptoms occured, such as Diabetes insipidus. This led the father to believe that his twin girls’ situation must be a genetic issue. Facing significant challenges navigating the right diagnosis, it mainly turned out that both of the twins have Wolfram syndrome, a rare genetic disorder, with no available drug therapies or cures and limited research and resources for rare diseases in Saudi Arabia. The father discovered wolfram syndrome global community which is missing in Saudi, so he decided to connect the Saudi patients and the GCC to the global wolfram community. Despite these challenges, with the help of international foundations focused on Wolfram syndrome and guidance from local genetics specialists and doctors, the father decided to create the Wolfram Heroes community. Inspired by the international journey in the disease, he made a commitment to advocate for Wolfram Syndrome and Rare Diseases in Saudi Arabia to help bring awareness and accelerate clinical trials and cure