Rare disease families build a community as health systems lag

When Roselyn's son was diagnosed with Joubert syndrome, which affects one in 100,000 children globally, she found support not in Kenya, but through a US-based foundation. Now, through Rare Disorders Kenya, she ensures no family has to search that far..

✨ Key Highlights

Families in Kenya affected by rare diseases are navigating isolating journeys, facing misdiagnoses and a significant lack of specialized treatment and support, prompting a push for greater recognition and inclusion in healthcare systems.

Globally, over 6,000 rare diseases affect an estimated 300 million people, with 95 percent lacking existing treatments.
Rare Disorders Kenya, a patient-led organization co-founded by Roselyn Kanja, advocates for better care and support for those with rare conditions.
Families often spend years searching for answers and connecting with others, experiencing financially and emotionally draining journeys as highlighted by stories like that of Debbie Ombati and her son with Proteus syndrome.