In 2019, for the first time ever, the UN adopted a political declaration on universal health coverage that includes strengthening efforts to address rare diseases. This milestone was as a result of advocacy by Rare Diseases Europe and Rare Diseases International.
In the Kenyan context, universal healthcare is one of the governments’ developmental priorities as set out in the Big Four Agenda and it is our hope that this shall lead to increased efforts towards addressing rare diseases in line with the international agenda as set out by the UN.
We aim at bringing together different rare conditions that are represented in the country. We hope to rally enough voices so as to be heard by the different stakeholders in the rare community to see how we can better improve the quality of life of persons with rare diseases in Kenya.
Health care and social support services are designed for patients with common diseases. A lack of a diagnosis can result in patients and families being denied necessary services in hospitals, schools and the community. Patients with rare and undiagnosed disorders require coordination of multiple specialists at any given time. Limited research into rare disorders provides limited hope and due to the small disease per market size, there are limited drug discovery initiatives by pharmaceutical companies when therapeutic targets are known.
We exist to support each other!
Alone we are rare. Together we are strong!