We provide a united voice for the rare disease community in Kenya
ABOUT US
Rare Disorders Kenya is a community of people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families and raising the profile of rare diseases across Kenya.
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.
RARE DISEASES AT A GLANCE, GLOBALLY
- Affects a small percentage of the population
- Sometimes also known as Orphan disease
- Definition of Rare varies in different countries/regions: UK, America, Europe, WHO
- Over 7,000 distinct rare diseases
- 72% have Genetic origin and are chronic in nature – long term disabilities
- 50% of rare diseases affect children, 30% don’t live past 5th birthday
- Cumulatively affect 300 Million worldwide
STATUS OF RARE DISEASES IN KENYA
- Lack of a rare disease definition as a country
- Lack of a national rare disease registry/database
- Lack of newborn screening as a protocol
- Inadequacy of specialized healthcare providers e.g. genetic counselors
- High medical costs for management of the conditions
- Genetic or rare conditions are rarely covered by insurances or are capped at a lower limit
- Stigma and discrimination in society
- High risk of psychological issues arising in patients and/or caregivers
COMMON CHALLENGES IN KENYA
- Misdiagnosis and Delayed treatment
- Lack of access to treatment and care
- Limited or non-existing treatment options
- Lack of information and support throughout the progression of their condition
- Social-Cultural factors unique to the African context preventing one seeking of proper medical care