Description
Introduction:
Rare diseases, though individually uncommon, collectively affect an estimated 4–6% of Kenya’s population and often have severe, chronic outcomes overlapping with non-communicable diseases. However, they remain absent from Kenya’s national health strategies, contributing to delayed diagnosis, fragmented care, and limited access to treatment. This case study examines how lived experience can inform advocacy strategies to integrate rare diseases into Kenya’s NCD framework by documenting effective advocacy actions, assessing their impact, and outlining policy recommendations for sustainable inclusion.
Methods:
From inception, Rare Disorders Kenya (RDK) has engaged families affected by rare diseases through support groups, interviews, and stakeholder consultations. Information was gathered from patient stories, policy meeting records,and media coverage. The data were reviewed to identify advocacy priorities and measure progress, focusing on policy engagement, representation in decision-making forums, and public awareness.
Results:
Over the past five years, RDK has grown from a small support group into a national voice for people living with rare diseases. Through campaigns like #RareDiseaseDay, we have brought visibility to conditions once rarely discussed. For the first time, the Ministry of Health has opened policy discussions on including rare diseases within the NCD framework. Public awareness has risen by around 60% after our 2024 campaign, and media coverage has increased by 75%, shifting from occasional mentions to regular national features.
Conclusion:
Lived experience, when strategically leveraged, can catalyze systemic reform for neglected health issues. As both a mother of two children with rare genetic conditions and an advocate, I have seen firsthand how personal stories can move policy from theory to action. Incorporating rare diseases into Kenya’s NCD policies would enhance health equity, improve diagnostic pathways, and align with Universal Health Coverage objectives.
Key recommendations include formal policy integration, rare disease data inclusion in health surveillance, cross-sector partnerships, and investment in diagnostic and treatment infrastructure.
| Country | Kenya |
|---|---|
| Organization | Others |
| Position | Co-Founder |
| Received a Grant? | No |
