Patient organisations in Kenya have advocated for increased awareness and care access for rare diseases; significant strides have been made over the last decade to bring this engagement to the global stage.
Rare Disorders Kenya is advocating for increased awareness and action on rare diseases. Photo: Rare Disorders Kenya
Rare diseases, and Rare Disease Day, have not always been commemorated in Kenya. It all started in 2014 when a desperate and compassionate mother wanted to make a difference in her small corner of the world. At that time, there was no support group for rare diseases in the country, so she took it upon herself to create one.
This awareness campaign for rare diseases in her community has since opened up a world of possibilities for people living with rare diseases in Kenya. As subsequent Rare Disease Days were celebrated, it brought more individuals and their families together, making it clearer that there was a need for more than just psychosocial support and annual awareness in February. A rare disease community was slowly growing and there was a gap between the healthcare providers in the country and people living with rare diseases.
In 2018, three brave Kenyan mothers—each with a child living with a rare disease—walked into a senior office at the Ministry of Health to share their challenges and request that rare diseases be prioritised in the ministry’s agenda. That day marked a turning point, leading to the formation of what is now known as Rare Disorders Kenya, or RDK. RDK is a patient-led organisation that advocates for and aims to improve the lives of people living with rare diseases in Kenya through various objectives.
Thanks to the partnership between the Ministry of Health and RDK, significant strides have been made on advocacy efforts and engagement on rare diseases in Kenya. Globally, RDK contributed to advocating for the adoption of the UN declaration on persons living with a rare disease in December 2021, which includes provisions specifically addressing the challenges faced by individuals living with rare diseases. This resolution serves as a soft law, encouraging member states to incorporate the rare disease agenda into their national health planning.
RDK has witnessed the gradual reduction of some of the challenges faced by those living with rare diseases. More healthcare providers are now better informed about rare diseases and refer patients to RDK for peer-to-peer support. The genetic discipline has grown in the country, with two geneticists and upcoming genetic counsellors. Additionally, RDK has been instrumental in advocating for more accurate and sensitive reporting on rare diseases by journalists, aiming to reduce stigma surrounding these conditions.
That said, other challenges continue to persist, like access for people living with rare diseases in rural and low-income areas. Those without access to smartphones or internet fail to receive awareness content, mostly due to the dissemination method used. The cost of management and treatment—if management and treatment are options at all—remains a huge barrier to access for members.
The new Social Health Insurance Fund (SHIF) in Kenya plays a key role in supporting individuals with rare conditions by offering broader health insurance coverage. However, many rare disease treatments are still not covered, making care inaccessible. As advocacy grows, there is a push for SHIF to expand its coverage to include rare diseases, ensuring more people have access to necessary treatments, genetic testing, and specialised care, particularly in underserved areas. This would improve the quality of life for people living with rare diseases across Kenya.
Another significant challenge in Kenya is the lack of research on rare diseases. With limited local research, healthcare providers often face difficulties in diagnosing and treating rare conditions effectively. More investment in research is urgently needed to improve understanding of rare diseases, develop targeted treatments, and support better healthcare strategies.
I am optimistic that with the upcoming adoption of the World Health Assembly (WHA) Resolution on rare diseases in May 2025, rare diseases will finally be recognised as a global health priority. This resolution will provide a platform for increased international collaboration, resource allocation, and policy development, ensuring that rare diseases receive the attention they deserve on the global stage. It will also encourage governments, healthcare systems, and research institutions worldwide to focus on improving diagnosis, treatment, and care for people living with rare diseases.
In Africa, and in Kenya in particular, rare disease awareness is increasing and concern for patients is growing. This comes in light of increased awareness and demand for clinical trials targeting rare diseases to be inclusive and holistic, and incorporate the African genome. With the introduction of an African alliance and associated collaborative efforts, the future landscape is no longer gloomy.
There is hope and with hope comes resilience.
The opinions expressed are those of the author and do not necessarily reflect the position of Re:solve Global Health.
Christine Mutena is a passionate advocate for rare diseases and disability in Kenya and globally. She is the co-founder of Rare Disorders Kenya (RDK) and a member of the Policy Committee of Rare Diseases International (RDI). A mother of two children with rare genetic conditions, she is dedicated to ensuring children with disabilities live full, independent lives with dignity.
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