Living with a rare unknown disease is tough. The impact on patients and caregivers especially in rural and informal settlements is undeniable. The Burden of Rare Diseases explores how lack of information, access to treatment and scarce resources for families has devastating outcomes.Catherine Sijehi had 7 children after she was married. The children were in good health until a rare disease that affected their legs struck and affected her first three male children who later died. Catherine sought for help from hospitals and herbalists but there was no success. Her fourth male son is currently with the rare disease.Naomi Katenji got a tumor on her one leg at age five. The tumor kept getting bigger to a point that it got too heavy for her. The doctor’s suggested that her leg should be amputated to curb the cancer from spreading into the other parts of her body. The amputation surgery was successful but after some time, Naomi started complaining of pains and died. Naomi’s brother Zabron developed a tumor between his chest and his back. He was taken to hospital where the doctor could not detect what the disease was. Tom Odhiambo narrates the beginning of his misery after falling ill in 2019. He went to hospital where he was told that he had cancer. Tom was diagnosed with HIV in 2017. He was put on ARVs. He took the ARVs for a while and stopped at some point. When he stopped, is when he was diagnosed with cancer.