Skip to content Skip to footer

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.

Rare Diseases
There are over 6,000 rare diseases
Million People
It is estimated that 300million people worldwide are living with a rare disease, 6 times the population of Kenya
Are normally genetically related while others are the result of infections (bacterial or viral), allergies and environmental causes
Rare Diseases
Only 5% of rare diseases have treatments
70% of those genetic rare diseases start at childhood
Unfortunately 30% of children with rare diseases will not live to see their 5th birthday

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).

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.

Kenya does not currently have an official definition of what constitutes a rare disease or a formal Rare Disease registry, and as such the lack of data on the prevalence and natural history of rare diseases in Kenya limits or prevents informed targeting of resources towards rare diseases.

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:

  • Misdiagnosis and/or delayed treatment which can lead to severe irreversible, debilitating and life threatening consequences​
  • High medical costs for management coupled with the fact that genetic or pre-existing conditions when insured are covered at very high premiums with low limits
  • Lack of new-born screening protocol that can detect some of the potentially fatal or disabling conditions before the child is symptomatic eg phenylketonuria (PKU)
  • Stigma and discrimination in society that ends up ostracising the affected from the community around them
  • Social-Cultural factors unique to the African context preventing one seeking proper medical care eg superstitious and religious beliefs
  • High risk of psychological issues arising in the patients and/or their caregivers
Best Choice for Creatives
This Pop-up Is Included in the Theme
Purchase Now