What are rare
A rare disease is any disease that affects a small percentage of the population. They are often serious, chronic and progressive in nature. Rare diseases include rare cancers such as childhood cancers and some other well known conditions, such as Spinal Muscular Atrophy.
Though individually the prevalence of rare diseases are low, collectively they pose huge public health burden to the people affected and the country.
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis and difficulties in accessing treatment and care which are expensive. This results in heavy social and financial burdens on the family.
The zebra has become a reference icon for a rare disease or condition.
Nguengang Wakap, S., Lambert, D.M., Olry, A. et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet 28, 165–173 (2020). https://doi.org/10.1038/s41431-019-0508-0
rare diseases in kenya
Status of Rare Diseases in Kenya
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. There are also cultural beliefs that lead to stigma, social exclusion and discrimination that families living with a rare disease face. Those affected by these diseases are more socially, economically, and culturally vulnerable and isolated.
Kenya, a member state of the United Nations, shall benefit from the recent adoption of the First ever UN General Assembly Resolution on Persons Living with a Rare Disease (PLWRD). Rare Disorders Kenya (RDK) was part of the advocacy campaign that saw rare disease civil society groups worldwide urge the United Nations to address the specific challenges of people living with a rare disease, develop policies that promote the full participation and inclusion in society of PLWRD, and protect the human rights of all people.
Closer back home, at a country-level, Kenya has adopted Universal Health Coverage as one of the government’s developmental priorities as set out in the Big Four Agenda. Whilst this has seen an increased attention given to non-communicable diseases, Rare Disorders Kenya (RDK) is still engaging policy makers in advocating for the inclusion of rare, genetic and inherited diseases as part of the non-communicable disease government-led agenda. This will ensure universal and equitable access to quality health services without financial hardship.
Common Challenges in Kenya
The development of National Strategies and Plans on Rare Diseases is also critical at a country-level to prioritize and therefore allocate budgetary resources, as well as spur action in addressing the specific needs of People living with Rare Diseases in Kenya.
The following are some of the common challenges that have been experienced by people living with various rare conditions in the country: