Rare Disorders Kenya (RDK) is a patient led organization comprising of patients, parents and caregivers of persons diagnosed with rare diseases in Kenya. The organization’s main aim is to engage the various stakeholders in the country in efforts to address the unique needs of those living with rare diseases.
We are dedicated to serving the brave, but often solitary, heroes battling one-of-a kind conditions that affect only but a few in the population. 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.
We are dedicated to serving the brave, but often solitary, heroes battling one-of-a kind conditions that affect only but a few in the population
Roselyn Kanja has been actively involved with the rare disease community since her son was diagnosed with a rare disease in 2017. This unexpected journey, coupled with the desire to learn more, led to the co-founding of Rare Disorders Kenya.
She combines her career in design management with her desire to support and give back to the Kenyan community. Her passion and fire to help those with Rare Diseases has enabled her to create awareness about the growing problem within the country and beyond. She is dedicated to ensuring that people with rare disorders have access to the treatments and care they require.
Christine Mutena is an immensely passionate advocate for rare diseases and special needs in Kenya and globally. These causes are deeply personal to her being a mother of two children, both of whom have non-related rare genetic conditions.
Her life objective is to hone and use the skills and knowledge garnered through her personal and professional experiences to aid children living with disabilities live full independent lives with dignity.
Cynthia is a lawyer by profession with a double Masters in International Commercial Law and International Relations.
She is the founding member of the Primary Immunodeficiencies Association-Kenya (PIDs Kenya) which is a patient organisation representing those affected by a primary immunodeficiency. PIDs Kenya is a member of the International Patient Organisation for Primary Immunodeficiencies (IPOPI)).
Elizabeth Njeri Kihuha is an entrepreneur and a passionate advocate for rare diseases and specifically Myasthenia Gravis (MG) in Kenya. These causes are especially important to her as she is a person living with MG since the diagnosis in 2010 and has been managing the condition to date.
Elizabeth’s mission statement in life is to contribute to society and to serve others.
Linda is a chartered development finance analyst. She has been an advocate for disadvantaged and vulnerable groups both locally and internationally through various volunteer opportunities.
Since the diagnosis of her son with a rare disorder, she has immersed herself in championing the rights of people living with rare diseases (PLWRDs) and aims to continuously tap into her expertise in policy analysis, research and advocacy to ensure the best possible outcomes for both patients and their families.
Carolyn Kanja joined Rare Disorders Kenya as a volunteer coordinator in 2022 to help achieve the RDK’s mission to be a strong common voice for people living with a rare disease in Kenya. She was greatly inspired by the story of her own sister who became a mother with a child with a rare disease and has become a champion of empowering others who are living with rare diseases in Kenya.
She is a social scientist and an active advocate for social inclusion with over 5 years of experience working with volunteers at the communal level. She is currently working on policy advocation for refugees based in Germany.