Rare Disorders Kenya (RDK a patient led organization comprising of patients, parents and caregivers of persons diagnosed with rare diseases in Kenya. The organization’s main aim is to engage the various stakeholders in the country in efforts to address the unique needs of those living with rare diseases.
A rare disease is any disease that affects a small percentage of the population. They are often serious, chronic and progressive in nature.
In Kenya families with rare illnesses are facing extraordinary challenges. These include scarcity of medical knowledge, delayed diagnosis as well as misdiagnosis, unnecessary treatments and surgeries, social isolation, financial hardship, lack of treatment options and early death.