About Ivan & Joan Foundation

Ivan and Joan Foundation Tanzania was founded by Winlady Boniface, a mother who demonstrated remarkable strength and resilience in the face of profound personal loss. She faced the unimaginable tragedy of losing both of her beloved children, Ivan and Joan, to Fanconi Anemia, a rare genetic disorder. By founding the Ivan and Joan Foundation, she has transformed her grief into a powerful mission-to raise awareness of FA and support families affected by this rare genetic disorder. Her efforts to ease the burden of FA on others are both admirable and deeply impactful.

For years, she confronted uncertainty, misdiagnoses, emotional exhaustion, and a daunting financial strain while seeking assistance both locally and internationally. Despite her relentless efforts, the journey toward obtaining a proper diagnosis and treatment was long, isolating, and ultimately heartbreaking.

While Fanconi Anemia is considered rare, the truth is that many rare diseases in Tanzania go undetected or misunderstood due to a lack of awareness, missed diagnosis, and lack of trained specialists. Children frequently receive incorrect diagnoses, leaving families bewildered and without support, while the high costs of treatment make survival a significant challenge. Tragically, Winlady's experience is not isolated-it resonates with countless others throughout the nation who endure their struggles in silence, lacking proper information and hope for recovery. The Ivan and Joan Foundation aims to shatter this silence. It serves as a call to action-to raise awareness, enhance early diagnosis, support mental and emotional wellbeing, and advocate for a healthcare system that acknowledges and addresses rare conditions with urgency and compassion.